What are your perceptions of end of life care? What are your expecations? What have you experienced?
Let's hear your point of view, let's share experiences. Did you have issues with communication between medical staff and yourself/loved ones? Was pain control adequate? Did you feel that palliative care staff were proactive? Did you feel yourself or your loved ones were actively involved in decision making with regards to treatment?
What can we change? What do you want to see improved?
I'd like to invite all readers to share their opinions, thoughts and experiences.
Monday, August 31, 2009
Palliative Care Intervention For Patients With Advanced Cancer Provides Quality Of Life Benefits
ScienceDaily (Aug. 31, 2009) — Patients with advanced cancer who received a palliative care intervention focused on addressing physical and psychosocial issues and care coordination that was provided at the same time as cancer treatment reported improved quality of life and mood but did not experience a significant change in the number of days in the hospital or the severity of their symptoms compared to patients who received usual care, according to a study in the August 19 issue of JAMA.
"Fifty percent of persons with cancer are not cured of their disease; however, with improved treatment even patients with advanced disease may live for years. Providing palliative care concurrent with oncology treatment has been proposed to improve quality of life for patients with advanced cancer," the authors write as background information in the article. Although there are recommended guidelines for palliative care concurrent with cancer treatment (such as chemotherapy and radiation), empirical evidence to support this recommendation has been limited.
Marie Bakitas, D.N.Sc., A.P.R.N., of the Norris Cotton Cancer Center at Dartmouth-Hitchcock Medical Center, Lebanon, N.H., and colleagues conducted a study from November 2003 through May 2008 to determine the effect of a palliative care intervention on quality of life, symptom intensity, mood, and resource use in 322 patients with advanced cancer. Patients were randomized to receive either the intervention, a multicomponent, psychoeducational program conducted by advanced practice nurses and consisting of 4 weekly educational sessions and monthly follow-up sessions until death or study completion (n = 161); or usual cancer care (n = 161). The researchers add that the intervention used a case management, educational approach to encourage patient activation, self-management and empowerment.
A number of assessment tools were used to measure quality of life, symptom intensity and mood. These measures were assessed at the beginning of the study, at 1 month and every 3 months until death or study completion.
During the course of the study, there was no statistically significant difference between the groups regarding the number of participants who received parenteral (by injection) chemotherapy or radiation therapy.
The researchers found that the intervention "demonstrated higher quality of life, lower depressed mood, but limited effect on symptom intensity scores and use of resources in intervention participants relative to those receiving usual cancer care. The intervention had no effect on the number of days in the hospital and ICU, the number of emergency department visits, or anticancer treatment because the proportions of participants in each group receiving these therapies were similar."
In regard to symptom intensity, "there may be little room for improvement because usual care participants also reported relatively low symptom intensity scores compared with patients with advanced cancer in other studies," the authors write. "It may be unrealistic to expect to reduce symptoms further in the setting of progressive disease."
"Institute of Medicine reports, the National Consensus Project for Quality Palliative Care, other consensus panels, and oncology professional societies agree that comprehensive cancer care must incorporate more than state-of-the-art disease-modifying treatment. Comprehensive, high-quality cancer care includes interdisciplinary attention to improving physical, psychological, social, spiritual, and existential concerns for the patient and his or her family," the authors write.
Journal reference:
Marie Bakitas; Kathleen Doyle Lyons; Mark T. Hegel; Stefan Balan; Frances C. Brokaw; Janette Seville; Jay G. Hull; Zhongze Li; Tor D. Tosteson; Ira R. Byock; Tim A. Ahles. Effects of a Palliative Care Intervention on Clinical Outcomes in Patients With Advanced Cancer: The Project ENABLE II Randomized Controlled Trial. JAMA The Journal of the American Medical Association, 2009; 302 (7): 741 DOI: 10.1001/jama.2009.1198
"Fifty percent of persons with cancer are not cured of their disease; however, with improved treatment even patients with advanced disease may live for years. Providing palliative care concurrent with oncology treatment has been proposed to improve quality of life for patients with advanced cancer," the authors write as background information in the article. Although there are recommended guidelines for palliative care concurrent with cancer treatment (such as chemotherapy and radiation), empirical evidence to support this recommendation has been limited.
Marie Bakitas, D.N.Sc., A.P.R.N., of the Norris Cotton Cancer Center at Dartmouth-Hitchcock Medical Center, Lebanon, N.H., and colleagues conducted a study from November 2003 through May 2008 to determine the effect of a palliative care intervention on quality of life, symptom intensity, mood, and resource use in 322 patients with advanced cancer. Patients were randomized to receive either the intervention, a multicomponent, psychoeducational program conducted by advanced practice nurses and consisting of 4 weekly educational sessions and monthly follow-up sessions until death or study completion (n = 161); or usual cancer care (n = 161). The researchers add that the intervention used a case management, educational approach to encourage patient activation, self-management and empowerment.
A number of assessment tools were used to measure quality of life, symptom intensity and mood. These measures were assessed at the beginning of the study, at 1 month and every 3 months until death or study completion.
During the course of the study, there was no statistically significant difference between the groups regarding the number of participants who received parenteral (by injection) chemotherapy or radiation therapy.
The researchers found that the intervention "demonstrated higher quality of life, lower depressed mood, but limited effect on symptom intensity scores and use of resources in intervention participants relative to those receiving usual cancer care. The intervention had no effect on the number of days in the hospital and ICU, the number of emergency department visits, or anticancer treatment because the proportions of participants in each group receiving these therapies were similar."
In regard to symptom intensity, "there may be little room for improvement because usual care participants also reported relatively low symptom intensity scores compared with patients with advanced cancer in other studies," the authors write. "It may be unrealistic to expect to reduce symptoms further in the setting of progressive disease."
"Institute of Medicine reports, the National Consensus Project for Quality Palliative Care, other consensus panels, and oncology professional societies agree that comprehensive cancer care must incorporate more than state-of-the-art disease-modifying treatment. Comprehensive, high-quality cancer care includes interdisciplinary attention to improving physical, psychological, social, spiritual, and existential concerns for the patient and his or her family," the authors write.
Journal reference:
Marie Bakitas; Kathleen Doyle Lyons; Mark T. Hegel; Stefan Balan; Frances C. Brokaw; Janette Seville; Jay G. Hull; Zhongze Li; Tor D. Tosteson; Ira R. Byock; Tim A. Ahles. Effects of a Palliative Care Intervention on Clinical Outcomes in Patients With Advanced Cancer: The Project ENABLE II Randomized Controlled Trial. JAMA The Journal of the American Medical Association, 2009; 302 (7): 741 DOI: 10.1001/jama.2009.1198
Monday, August 17, 2009
Mato Medic 21/1/42 - 17/8/09 Rest in Peace Dad
My father passed away earlier this evening. He finally lost his battle with prostate cancer.
They tried to inject him with something that would numb his leg because of the agony this caused him and it seems trying to bring him some pain relief finally brought him peace.
His body couldn't handle the double anaesthetic he received and according to the Dr that performed the procedure "he had a lack of oxygen". There are still many questions to be answered.
Dad I am so sorry, I thought this would bring you pain relief and a better quality of life for the short time you had left. I didn't realise that your poor, ravaged cancer ridden body couldn't cope with it.
I love you so much and I started this blog in honour of you. I will never give up the fight on prostate cancer and palliative care so that others may be treated better than you were.
They tried to inject him with something that would numb his leg because of the agony this caused him and it seems trying to bring him some pain relief finally brought him peace.
His body couldn't handle the double anaesthetic he received and according to the Dr that performed the procedure "he had a lack of oxygen". There are still many questions to be answered.
Dad I am so sorry, I thought this would bring you pain relief and a better quality of life for the short time you had left. I didn't realise that your poor, ravaged cancer ridden body couldn't cope with it.
I love you so much and I started this blog in honour of you. I will never give up the fight on prostate cancer and palliative care so that others may be treated better than you were.
Friday, August 14, 2009
Euthanasia in the Netherlands
The International Taskforce on Euthanasia and Assisted Suicide report facts on the practice of Euthanasia in The Netherlands (where it is legal):-
The Remmelink Report-- On September 10, 1991, the results of the first, official government study of the practice of Dutch euthanasia were released. The two volume report (6)--popularly referred to as the Remmelink Report (after Professor J. Remmelink, M.J., attorney general of the High Council of the Netherlands, who headed the study committee)--documents the prevalence of involuntary euthanasia in Holland, as well as the fact that, to a large degree, doctors have taken over end-of-life decision making regarding euthanasia. The data indicate that, despite long-standing, court-approved euthanasia guidelines developed to protect patients, abuse has become an accepted norm. According to the Remmelink Report, in 1990:
2,300 people died as the result of doctors killing them upon request (active, voluntary euthanasia).(7)
400 people died as a result of doctors providing them with the means to kill themselves (physician-assisted suicide).(8)
1,040 people (an average of 3 per day) died from involuntary euthanasia, meaning that doctors actively killed these patients without the patients' knowledge or consent.(9)
14% of these patients were fully competent. (10)
72% had never given any indication that they would want their lives terminated. (11)
In 8% of the cases, doctors performed involuntary euthanasia despite the fact that they believed alternative options were still possible. (12)
In addition, 8,100 patients died as a result of doctors deliberately giving them overdoses of pain medication, not for the primary purpose of controlling pain, but to hasten the patient's death. (13) In 61% of these cases (4,941 patients), the intentional overdose was given without the patient's consent.(14)
According to the Remmelink Report, Dutch physicians deliberately and intentionally ended the lives of 11,840 people by lethal overdoses or injections--a figure which accounts for 9.1% of the annual overall death rate of 130,000 per year. The majority of all euthanasia deaths in Holland are involuntary deaths.
The Remmelink Report figures cited here do not include thousands of other cases, also reported in the study, in which life-sustaining treatment was withheld or withdrawn without the patient's consent and with the intention of causing the patient's death. (15) Nor do the figures include cases of involuntary euthanasia performed on disabled newborns, children with life-threatening conditions, or psychiatric patients. (16)
The most frequently cited reasons given for ending the lives of patients without their knowledge or consent were: "low quality of life," "no prospect for improvement," and "the family couldn't take it anymore."(17)
In 45% of cases involving hospitalized patients who were involuntarily euthanized, the patients' families had no knowledge that their loved ones' lives were deliberately terminated by doctors. (18)
According to the 1990 census, the population of Holland is approximately 15 million. That is only half the population of California. To get some idea of how the Remmelink Report statistics would apply to the U.S., those figures would have to be multiplied 16.6 times (based on the 1990 U.S. census population of approximately 250 million).
To read more here is the link:-
http://www.internationaltaskforce.org/fctholl.htm
The Remmelink Report-- On September 10, 1991, the results of the first, official government study of the practice of Dutch euthanasia were released. The two volume report (6)--popularly referred to as the Remmelink Report (after Professor J. Remmelink, M.J., attorney general of the High Council of the Netherlands, who headed the study committee)--documents the prevalence of involuntary euthanasia in Holland, as well as the fact that, to a large degree, doctors have taken over end-of-life decision making regarding euthanasia. The data indicate that, despite long-standing, court-approved euthanasia guidelines developed to protect patients, abuse has become an accepted norm. According to the Remmelink Report, in 1990:
2,300 people died as the result of doctors killing them upon request (active, voluntary euthanasia).(7)
400 people died as a result of doctors providing them with the means to kill themselves (physician-assisted suicide).(8)
1,040 people (an average of 3 per day) died from involuntary euthanasia, meaning that doctors actively killed these patients without the patients' knowledge or consent.(9)
14% of these patients were fully competent. (10)
72% had never given any indication that they would want their lives terminated. (11)
In 8% of the cases, doctors performed involuntary euthanasia despite the fact that they believed alternative options were still possible. (12)
In addition, 8,100 patients died as a result of doctors deliberately giving them overdoses of pain medication, not for the primary purpose of controlling pain, but to hasten the patient's death. (13) In 61% of these cases (4,941 patients), the intentional overdose was given without the patient's consent.(14)
According to the Remmelink Report, Dutch physicians deliberately and intentionally ended the lives of 11,840 people by lethal overdoses or injections--a figure which accounts for 9.1% of the annual overall death rate of 130,000 per year. The majority of all euthanasia deaths in Holland are involuntary deaths.
The Remmelink Report figures cited here do not include thousands of other cases, also reported in the study, in which life-sustaining treatment was withheld or withdrawn without the patient's consent and with the intention of causing the patient's death. (15) Nor do the figures include cases of involuntary euthanasia performed on disabled newborns, children with life-threatening conditions, or psychiatric patients. (16)
The most frequently cited reasons given for ending the lives of patients without their knowledge or consent were: "low quality of life," "no prospect for improvement," and "the family couldn't take it anymore."(17)
In 45% of cases involving hospitalized patients who were involuntarily euthanized, the patients' families had no knowledge that their loved ones' lives were deliberately terminated by doctors. (18)
According to the 1990 census, the population of Holland is approximately 15 million. That is only half the population of California. To get some idea of how the Remmelink Report statistics would apply to the U.S., those figures would have to be multiplied 16.6 times (based on the 1990 U.S. census population of approximately 250 million).
To read more here is the link:-
http://www.internationaltaskforce.org/fctholl.htm
Euthanasia - Dirty word?
Euthansia. Everyone has a different opinion, those for and against. And within what is considered Euthanasia, different types, (BBC quoted):-
Voluntary euthanasia
The person wants to die and says so. This includes cases of:
asking for help with dying
refusing burdensome medical treatment
asking for medical treatment to be stopped, or life support machines to be switched off
refusing to eat
simply deciding to die
Non-voluntary euthanasia
The person cannot make a decision or cannot make their wishes known. This includes cases where:
the person is in a coma
the person is too young (eg a very young baby)
the person is senile
the person is mentally retarded to a very severe extent
the person is severely brain damaged
the person is mentally disturbed in such a way that they should be protected from themselves
Involuntary euthanasia
The person wants to live but is killed anyway.This is usually murder but not always. Consider the following examples:
A soldier has their stomach blown open by a shell burst. They are in great pain and screaming in agony. They beg the army doctor to save their life. The doctor knows that they will die in ten minutes whatever happens. As he has no painkilling drugs with him he decides to spare the soldier further pain and shoots them dead.
A person is seen at a 10th floor window of a burning building. Their clothes are on fire and fire brigade has not yet arrived. The person is screaming for help. A passer by nearby realises that within seconds the person will suffer an agonising death from burns. He has a rifle with him and shoots the screaming person dead.
A man and a woman are fleeing from a horde of alien monsters notorious for torturing human beings that they capture. They fall into a pit dug to catch them. As the monsters lower their tentacles into the pit to drag the man out he begs the woman to do something to save him. She shoots him, and then kills herself.
Where do your beliefs lie? for or against?
Voluntary euthanasia
The person wants to die and says so. This includes cases of:
asking for help with dying
refusing burdensome medical treatment
asking for medical treatment to be stopped, or life support machines to be switched off
refusing to eat
simply deciding to die
Non-voluntary euthanasia
The person cannot make a decision or cannot make their wishes known. This includes cases where:
the person is in a coma
the person is too young (eg a very young baby)
the person is senile
the person is mentally retarded to a very severe extent
the person is severely brain damaged
the person is mentally disturbed in such a way that they should be protected from themselves
Involuntary euthanasia
The person wants to live but is killed anyway.This is usually murder but not always. Consider the following examples:
A soldier has their stomach blown open by a shell burst. They are in great pain and screaming in agony. They beg the army doctor to save their life. The doctor knows that they will die in ten minutes whatever happens. As he has no painkilling drugs with him he decides to spare the soldier further pain and shoots them dead.
A person is seen at a 10th floor window of a burning building. Their clothes are on fire and fire brigade has not yet arrived. The person is screaming for help. A passer by nearby realises that within seconds the person will suffer an agonising death from burns. He has a rifle with him and shoots the screaming person dead.
A man and a woman are fleeing from a horde of alien monsters notorious for torturing human beings that they capture. They fall into a pit dug to catch them. As the monsters lower their tentacles into the pit to drag the man out he begs the woman to do something to save him. She shoots him, and then kills herself.
Where do your beliefs lie? for or against?
Tuesday, August 11, 2009
Palliative Care: A model for innovative health and social policies
From the European Association of Palliative Care
Resolution on palliative care, adopted on 29th of January by the Parliamentary Assembly of the Council of Europe.
Rapporteur: Wolfgang Wodarg
The Parliamentary Assembly of the Council of Europe has unanimously adopted the resolution produced by mr. Wodarg as a part of his report: Palliative care, a model for innovative health and social policies. The report states clearly the need for the development of palliative care in all European countries, to make palliative care available for all patients with life threatening diseases who need it.However, the report does not only support palliative care as a comprehensive approach for severely ill and dying patients.
It commends palliative care as an innovative new way, which can be used as a model for other areas of health care. Setting flexible goals of therapy for the individual patients, and more important, setting these goals in close communication with the patient, as well as supporting the autonomy of the patient and enabling him to experience autonomy even with increasing physical or cognitive impairment are important issues that palliative care can contribute to other areas of health care. In consequence, the report and the explanatory memorandum discuss the importance of ethical concepts such as autonomy or allocation of resources in detail.
The Parliamentary Assembly recommends that member states should promote palliative care as a key pillar of care provision. Rewards for non-product related services should be introduced as incentives to a chieve this. The Assembly also recommends strengthening the contribution from primary More specifically, the Parliamentary Assembly recommends member states to promote symptom control not only in palliative care, but also in the domain of curative medicine, In addition, indicators for progress as well as annual reports should be useful tools for the improvement of palliative care in Europe. There are only few points in the resolution that merit critical discussion.
The report takes into account available surveys on the status of hospice and palliative care in Europe. However, it is based in many parts on the German experiences, and decision makers in other European countries may find it difficult to accommodate all recommendations within the setting of their national health system. Whereas the impact of volunteer work in hospice and palliative care and the need for the involvement of the primary care sector does receive adequate consideration and acknowledgement in the report, the participation of specialized professionals is also of major importance and should not be neglected.
Most general practitioners treat only very few palliative care patients per year, and may lack knowledge and skills to relieve symptoms adequately, deliver psychosocial and spiritual care and coordinate the care for complex cases. In many European countries model projects have demonstrated the efficacy of counselling and care services led by specialists, networking with general practitioners and other carers and service providers in the area. EAPC has given considerable input to the report, from the head office as well as from the Task Force on Development led by Carlos Centeno and David Clark. Information from the Atlas of Palliative Care produced by that Task Force was used as an important resource on the current status of palliative care in the different European regions. We hope that the resolution and the report will archieve wide dissemination, and that it will be used by national governments and by national and regional stakeholders to guide and foster the development of hospice and palliative care. The goal is to make adequate provision of palliative care available to all those who need it, regardless of the economical, social or cultural setting. Setting up a continuous communication with the political structures in Europe will be a major focus of EAPC in the next years to pursuit this ultimate goal.
Prof. Dr. Lukas Radbruch(President of EAPC)
Resolution on palliative care, adopted on 29th of January by the Parliamentary Assembly of the Council of Europe.
Rapporteur: Wolfgang Wodarg
The Parliamentary Assembly of the Council of Europe has unanimously adopted the resolution produced by mr. Wodarg as a part of his report: Palliative care, a model for innovative health and social policies. The report states clearly the need for the development of palliative care in all European countries, to make palliative care available for all patients with life threatening diseases who need it.However, the report does not only support palliative care as a comprehensive approach for severely ill and dying patients.
It commends palliative care as an innovative new way, which can be used as a model for other areas of health care. Setting flexible goals of therapy for the individual patients, and more important, setting these goals in close communication with the patient, as well as supporting the autonomy of the patient and enabling him to experience autonomy even with increasing physical or cognitive impairment are important issues that palliative care can contribute to other areas of health care. In consequence, the report and the explanatory memorandum discuss the importance of ethical concepts such as autonomy or allocation of resources in detail.
The Parliamentary Assembly recommends that member states should promote palliative care as a key pillar of care provision. Rewards for non-product related services should be introduced as incentives to a chieve this. The Assembly also recommends strengthening the contribution from primary More specifically, the Parliamentary Assembly recommends member states to promote symptom control not only in palliative care, but also in the domain of curative medicine, In addition, indicators for progress as well as annual reports should be useful tools for the improvement of palliative care in Europe. There are only few points in the resolution that merit critical discussion.
The report takes into account available surveys on the status of hospice and palliative care in Europe. However, it is based in many parts on the German experiences, and decision makers in other European countries may find it difficult to accommodate all recommendations within the setting of their national health system. Whereas the impact of volunteer work in hospice and palliative care and the need for the involvement of the primary care sector does receive adequate consideration and acknowledgement in the report, the participation of specialized professionals is also of major importance and should not be neglected.
Most general practitioners treat only very few palliative care patients per year, and may lack knowledge and skills to relieve symptoms adequately, deliver psychosocial and spiritual care and coordinate the care for complex cases. In many European countries model projects have demonstrated the efficacy of counselling and care services led by specialists, networking with general practitioners and other carers and service providers in the area. EAPC has given considerable input to the report, from the head office as well as from the Task Force on Development led by Carlos Centeno and David Clark. Information from the Atlas of Palliative Care produced by that Task Force was used as an important resource on the current status of palliative care in the different European regions. We hope that the resolution and the report will archieve wide dissemination, and that it will be used by national governments and by national and regional stakeholders to guide and foster the development of hospice and palliative care. The goal is to make adequate provision of palliative care available to all those who need it, regardless of the economical, social or cultural setting. Setting up a continuous communication with the political structures in Europe will be a major focus of EAPC in the next years to pursuit this ultimate goal.
Prof. Dr. Lukas Radbruch(President of EAPC)
Monday, August 10, 2009
The Dying Process....
I was just reading certain passages from a book written by Julia Lawton called the The Dying Process regarding palliative care from patients points of view and her observations certainly gave me much food for thought and confirmed my own feelings and thoughts on palliative care in this country.
I am not 100% convinced by Palliative Care facilities and principles, it seems the best intentions are in theory correct but are left for too much interpretation and scope which therefore means the kind of palliative care service practiced or given varies from either very good or to very bad.
For instance it seems to me that you have those that are elderly and ill seem to be placed in these facilities who are about to pass and you are wondering if this is a nursing home drive through service? Then you have those with terminal illnesses who are still trying to battle their illness and haven't given up on their lives yet but have no choice because there aren't adequate facilities to have them at home or they require a pain management relief which isn't provided at your garden variety public or private hospital, therefore the policy of the public health system is to dump them into a Palliative Care facility/hospice.
This can't seriously be psychologically good for these type of patients. Imagine having a terminal illness and a will to still live? You are still in control of your mind but may have physical limitations and you are forced into sharing a ward and witnessing the public deaths of others? Not only does the person dying before your very eyes lose their own dignity and privacy as a person, but you have to feel their pain and their indignity also? It's very confronting and seems to prolong your own agony. I could only imagine it would feel like dying countless of times.
And please don't give me the well "nurses and doctors see it all the time". Sure they do, they are trained and paid to do this, but they aren't dying themselves, they go home to their comfortable lives knowing they have their health and families. They go home to forget about it. But when its you or loved one seeing this day in and day out, It would be psychologically devastating, and feeling this sort of depression, it would only exacerbate and be deterimental to your own condition.
It seems the feelings of those going through this are second place to the issues of lack of funding, not enough experienced staff, nurses, and very few doctors whom main concern is to prescribe morphine and then their role is done. Palliative care is to provide comfort and pain relief. But does it really? Is changing the diaper of an incontinent patient really caring? How would this comfort a patient knowing why they are in this morbid atmopshere when they are glued to their bed waiting for death and watching the deaths of others? In fact I would begger to differ on the definition of caring in a palliative care setting from my own experiences.
It seems like the terminally ill and elderly are written off and are left to hide from those the medical profession have deemed incurable from society in a geriatric hospice. You're a social leper.
It seems the terminallly ill aren't encouraged to live the rest of their lives as well as they can, When you are cut off from society, you are no longer included or encouraged into society? Palliative Care facilities don't encourage nor do they give hope to those the most vunerable in society. It's all about waiting to die and changing the sheets of the bed for the next victim.
It's no coincidence that terminal patients who are admitted into these facilities deterioate quickly. In a week a patient who could use a walking frame to walk and who could feed himself can a week later, sleep the entire day, need someone to help him eat and is told they cannot leave their own bed. How can one in this setting possibly try and live as well as they can with the little time they have left?
It seems the psychology is that these people are encouraged to depend on and in most cases lacklustre staff or student nurses on medication, being able to go to the toilet and their very own existance on these people, this way they are easily manipulated and taken care of in nursing terms. They lose themselves to another and aren't given the opportunity to truly live the best they can in the sunset of their lives.
I am not 100% convinced by Palliative Care facilities and principles, it seems the best intentions are in theory correct but are left for too much interpretation and scope which therefore means the kind of palliative care service practiced or given varies from either very good or to very bad.
For instance it seems to me that you have those that are elderly and ill seem to be placed in these facilities who are about to pass and you are wondering if this is a nursing home drive through service? Then you have those with terminal illnesses who are still trying to battle their illness and haven't given up on their lives yet but have no choice because there aren't adequate facilities to have them at home or they require a pain management relief which isn't provided at your garden variety public or private hospital, therefore the policy of the public health system is to dump them into a Palliative Care facility/hospice.
This can't seriously be psychologically good for these type of patients. Imagine having a terminal illness and a will to still live? You are still in control of your mind but may have physical limitations and you are forced into sharing a ward and witnessing the public deaths of others? Not only does the person dying before your very eyes lose their own dignity and privacy as a person, but you have to feel their pain and their indignity also? It's very confronting and seems to prolong your own agony. I could only imagine it would feel like dying countless of times.
And please don't give me the well "nurses and doctors see it all the time". Sure they do, they are trained and paid to do this, but they aren't dying themselves, they go home to their comfortable lives knowing they have their health and families. They go home to forget about it. But when its you or loved one seeing this day in and day out, It would be psychologically devastating, and feeling this sort of depression, it would only exacerbate and be deterimental to your own condition.
It seems the feelings of those going through this are second place to the issues of lack of funding, not enough experienced staff, nurses, and very few doctors whom main concern is to prescribe morphine and then their role is done. Palliative care is to provide comfort and pain relief. But does it really? Is changing the diaper of an incontinent patient really caring? How would this comfort a patient knowing why they are in this morbid atmopshere when they are glued to their bed waiting for death and watching the deaths of others? In fact I would begger to differ on the definition of caring in a palliative care setting from my own experiences.
It seems like the terminally ill and elderly are written off and are left to hide from those the medical profession have deemed incurable from society in a geriatric hospice. You're a social leper.
It seems the terminallly ill aren't encouraged to live the rest of their lives as well as they can, When you are cut off from society, you are no longer included or encouraged into society? Palliative Care facilities don't encourage nor do they give hope to those the most vunerable in society. It's all about waiting to die and changing the sheets of the bed for the next victim.
It's no coincidence that terminal patients who are admitted into these facilities deterioate quickly. In a week a patient who could use a walking frame to walk and who could feed himself can a week later, sleep the entire day, need someone to help him eat and is told they cannot leave their own bed. How can one in this setting possibly try and live as well as they can with the little time they have left?
It seems the psychology is that these people are encouraged to depend on and in most cases lacklustre staff or student nurses on medication, being able to go to the toilet and their very own existance on these people, this way they are easily manipulated and taken care of in nursing terms. They lose themselves to another and aren't given the opportunity to truly live the best they can in the sunset of their lives.
Friday, August 7, 2009
Daniels Shield - Fighting abuse in Residential Care Facilities in Australia
Do you have concerns regarding the treatment of your loved ones in aged care facilities? Read on...
I stumbled across Daniels Shield in my search for complaints on Palliative Care. Unfortunately too often, the elderly are mistreated, abused and aren't given the dignity, respect and care they deserve in this country.
Daniels Shield is an independant voice to Government and the Aged Care industry. Their webiste is certainly worth a look.
http://danielsshield.bremy.com/home.aspx
I stumbled across Daniels Shield in my search for complaints on Palliative Care. Unfortunately too often, the elderly are mistreated, abused and aren't given the dignity, respect and care they deserve in this country.
Daniels Shield is an independant voice to Government and the Aged Care industry. Their webiste is certainly worth a look.
http://danielsshield.bremy.com/home.aspx
Monday, August 3, 2009
Unfortunate Reality in Australia's Palliative Health Care Service
Here is a copy of a letter that was sent to the Palliative Care Association of NSW. The issues raised were quite serious. Despite a letter of sympathy for this horrible experience in Braeside Hospital - Palliative Care facility in Prairiewood, NSW, it appears the issues addressed, weren't particularly addressed.
Judge the situation for yourself, Have any of you experienced this type of neglect and poor standard of service for your loved one?
The Executive Officer
Palliative Care NSW
PO Box M48 Missenden Road
CAMPERDOWN NSW 2050
Dear Sir/Madam,
I wish to voice my dissapointment with Palliative Care services in NSW. There clearly are issues with these services, lack of funding, not enough staff and and inconsistancies in the standard of care from one facility to another.
In fact, if you happen to live in the wrong postcode you are discouraged or even refused consideration by another facility because you don't live in their geographical area, even if you can afford the service with the better reputation. Considering care in one facility maybe better than another (and I assure you this is the case), and should one have the best in private health cover, How is it that a public facility (ie Palliative Care) is able to deny you access to their facility? Something seriously stinks with the entire system if either an elderly or terminally ill patient with private cover cannot choose their own facility or doctors in that facility to treat them at the time in their life where they should be afforded this right.
I am a daughter of an Advanced Prostate Cancer patient who has been fighting for and alongside my father for a period of almost 5 years. I have fought to get him the best in doctors, specialists and treatments in this country and I have seen with my own eyes the lack of duty of care in alot of cases when it comes to the treatment of those with terminal illnesses - those the medical field have basically given up on and just want to shove into a palliative care facility because as in one practitioner's words to me - it's the end of the road.
It didn't matter that for 4 of those years, there was alot of misinformation, lack of communication and doctors that didn't seem to treat his illness aggressively and didn't diagnose changes in his condition which cost him his mobility and he was basically plugged with painkillers, it didn't even matter that I understand doctors are overloaded with patients and that even getting appointments for chemotherapy or radiotherapy or even his medical oncologist took weeks. But now he is in his final stage of his illness and the indignity he has to suffer not only from his illness but from lacklustre staff at faciliites who seem to promote a culture of "well this is a place people come to die and we'll treat pain but we won't bother addressing any other medical issues in conjunction with the particular illness" is glarlingly obvious and rather painful to watch.
But what I do have issue with is the definition of palliative care and how its practiced and how it appears to be governed.
a) Why are palliative care services only offered in conjunction with public hospitals? I understand palliative care is a fairly new concept in this country but I am surprised that private palliative care centres aren't offered in this country.
b) Why are those with private insurance not able to choose which public facility they wish to be treated at? Why are they told where they need to be treated and not given an option at which facility of their own choosing? And why do geographical boundaries exist? This I intend on pursuing with private insurance providers. Because if for instance a private patient from the south western suburbs isn't accepted into a facility in the eastern suburbs because they don't live in this area, then private insurance coverage is clearly a falsehood and offers no benefits to those suffering terminal illnesses.
Ideally all palliative care facilities should provide equally good care, but the fact is they don't. Why should my father be penalised because he lives outside a petty geographical area, after all he still lives in the Sydney metropolitan area.
I had been caring for my father at home with the help of my husband, brother and close friends who stepped up to the plate to help our family, Dad got a urinary tract infection from the incessant use of a catheter. I had him admitted into Fairfield Public Hospital. He had pain control issues and the hospital didn't want to know, and kept pressuring (and I don't mean suggesting, I mean pressure, constant) our family to have him admitted into Braeside. I had initially resisted as I had heard alot of terrible things about the hospital itself, it was a miserable place, I had heard from those I knew who had put their loved ones in their and either withdrew them or they had lost them quickly as treatment seemed to be, doping them to the eyeballs with hardcore painkillers.
I felt this psychologically would not be a good move, dad may have terminal cancer but he is only 67. How awful, being put into a place that supposedly offers palliative care, but no hope, just death from those much older than himself all around him in a haze of painkillers. It sure was the last road, even those that could have been helped or rehabilitated physically or mentally to live as well as they could, being left to die like lepers in a living morgue with the bare minimum being done, food, medicine and nothing more.
And this is whats left when you are deemed incurable and too old to live in society?
I had to my eventual regret placed my father into Braeside, after continual prodding and pressure from Fairfield Public Hospital, they didn't want to deal with him, they made it clear they wanted him out, they didn't have the facilities to deal with pain management and kept telling me over and over again they are a acute hospital and aren't able to treat him. They kept pressuring us to put him into Braeside with assurances that this was the best facility for my father. I knew then they were passing the buck and its only then I understood the whole procedure with the elderly and those terminally ill was. It seemed to me that hospital policy seemed to be, if you were over 70 and sick or terminally ill that you were told to go to Braeside. And I figured could it be any worse than the treatment he received at Fairfield Hospital?
Perhaps a pain management doctor could help him and I could bring him back home. But Fairfield did tell me that Braeside practiced no resusicitation, I thought this was illegal. How could it be that if someone had a heart attack they would not assist them? In other words if don't agree to this you cannot be admitted to Braeside, I discussed my concerns with Dr Megan Best at Braeside and she explained in greater detail, that a) my father wasn't deemed to be a cardiac risk and b) We could get him over to Fairfield Hospital if that was our wish.
What I found out was certainly an eyeopener. They were so desperate to get him to Braeside, as soon as the family agreed they wheeled him over in a wheelchair within an hour and from what I saw it seemed like just another hospital, except the smell of excrement and other bodily fluids overcame me, and all the patients were old and 90% were all asleep. To be fair, some nurses were very caring, but alot were just doing their job and quite a few were student nurses. Doctors were only seen when there was an issue with a patient and Dr Best who convinced us to give Braeside a shot was only in 2 days a week. This to me seemed to be a mobile nursing home or hospice. And it's not what I imagined palliative care to be. I can't speak for everyone and I am no doctor but the patients in the same ward as my father were in their 80's and were about to die, most were doped up the entire day and night and I had quit my job as an HR officer to look after my father as his carer, so I spent alot of time at Braeside and I got to see alot of what I didn't want to see.
Yes they should make my father comfortable, but my father despite his illness wasn't on his deathbed as yet and went through emotional turmoil each time a patient around him passed away and this was guaranteed twice a week. My father is terminally ill and required pain management control and he was placed there for a short stay, but somehow he was surrounded by death and by patients that could barely communicate with him they were under so much morphine and some slept 23 out of 24 hours and didn't touch the pittance they were fed. My father knew their stories from their relatives who came to visit. How can this atmosphere be good for any terminally ill patient with a will to live?
It seems like a lack of resources and just patient dumping the sick and the elderly together in a place waiting to die or be killed by the amount of painkillers given to them and little else. Now some relatives may wish this for their parents but not I. I wanted to give the best care for my father and keep him alive as much as I could whilst he was still very lucid, and had some kind of mobility, I wanted to bring him home to his family.
As soon as he went into Braeside his condition deteriorated rapidly, I would say a part of it was his illness and lack of care regarding it, Braeside didnt' care about his illness just his pain medication and partly the morbid, miserable atmosphere. In fact he would get so distressed they would need to give him something to calm him.
I would notice staff who didn't want to lift my father to take him to the toilet and would just tell them they he can only use a bedpan despite the fact that a week ago he was able to walk with the use of a frame, but they said, due to OH&S reasons they wouldnt' allow it. My father would cry and get distressed and would tell them, he is not an animal and wants to be assisted up onto the walking frame so that he could go to the toilet just a few feet away, yet they refused him on many occassions, until I questioned this. And I heard about OH&S over and over again, yet when he was at Fairfield Hospital this wasn't an issue, they did assist him and allowed him to use the walking frame to walk.
There were other occassions where the poor man soiled his bed because when he asked for assistance to go to the toilet he was told, they were busy and didn't have enough staff to help. I saw my father's spirit broken and I was very upset by watching him cry in shame and I felt his indignity. Meanwhile, during his stay there he continued to get infections, and considering his illness they didnt' see an urgent need to get him the acute care he required, for instance, they didnt' spot a urinary tract infection, yet my brother and I knew the symptoms from the previous experience, the nurse we told at the desk that we were concerned he may have another didn't seem to worry about his 104 F temperature and waited till the next morning to inform someone.
The poor man suffered a night of delirium and wanting to get out of bed. And he continued to get infections, I knew for a fact his sheets weren't changed daily and I would commonly see urine stains on them and on his clothing. The man was ill with infections and would soil his underwear, to add insult to injury the nursing staff would simply put it in a bag and tie it. So when I took these items of clothing home, imagine my horror to discover faeces inside his underwear, not even common sense was practiced where for OH&S reasons they should rinse out his underwear before tying it in a bag. I didn't take his laundry home each day to wash, sometimes it would be a few days, yet this would be sitting at the side of his bed or in his cupboard. Disgusting. Palliative Care indeed.
The final straw came when 3 weeks ago I walked into Braeside at 9.30pm and my father's room was opposite to the nurses desk. I had counted 5 nursing staff at the desk just chatting amongst themselves. The light was turned out in my father's ward, I saw my father half way out of the bed moaning at the top of his voice, almost screaming, I walked over to him switched on his light and his face was bright crimson, he kept speaking incohrently, asking me to give him tablets and to help him and he continued to moan, I was horrified and rushed to the desk and said, What on earth is going on here? my father is very ill? I want the doctor here now. I was advised he had an infection and was given oral antibiotics - they obviously were not working, he was suffering so much and he was ignored, by no less that 5 nursing staff. I said he needs acute care now. I want him transferred to Fairfield Hospital asap. I was told they needed to call the doctor, and after they had done so told me that the doctor can give him anitbiotics intravenously and they will check on him tommorow morning. Not good enough, he was burning, had an obvious very high temperature and needed the care now. I was told they could give him antibiotics intravenously but not fluid through the drip as he was dehydrated badly they didn't have a drip? not does it appear a doctor on hand as I was forced to negotiate my father's care in an urgent situation with a doctor over the phone.
I refused to accept this and I advised I have an enduring power of attorney and my wish is for him to be transferred to Fairfield. They then called the doctor back who spoke to me and tried to do everything in his power not to have my father transferred. I finally said, Doctor are you telling me that you will not organise for an ambulance? Of course he said no, and said he would organise for an ambulance. It took 1 hour for an ambulance to pick him up - Fairfield Hospital is next door, less than 3 minutes away, yet I had to wait for 1 hour. It appears that my father had a bad infection in his left leg where he had dvt and he had a blister on his heel that broke open with liquid pouring out of his leg.
Is this what palliative care is? I vowed never to admit him into Braeside again, I am convinced I saved my father's life that night and it had nothing to do with the palliative care offered at Braeside, the fact is, it wasn't offered adequately. And I've wondered how many other patients are dealt with in this way? Palliative care may ideally be for caring and the comfort of those, but I am not convinced that a terminally ill cancer patient should be placed in an area where this is the standard of care. I am not in favour of a palliative care system that offers morhpine but little else and still does not treat the underlying illness with regards to those suffering from one, as opposed to the elderly that are about to die in a week or so time.
There seems to be shortfall that isn't addressed properly, my father may require palliative care, ie pain management but he is not a right off and I will not accept him being treated as one, the illness itself should still require treatment and monitoring which is NOT being done by the so called palliative care facility and I am certain I am not the only one who realises this and expects more by way of care for those who deserve better at this time in their lives.
And this is how those who have been given a life sentence tend to pass away, their underlying illness isn't being treated at facilities such as Braeside, and they only focus on end of life and pain mangement care, therefore, once you stop treating the illness or monitoring it, it does end up killing one sooner than if they had received continual treatment for their illness (if possible) and the fact is, terminally ill patients should be treated at a facility where they do have care for their pain management and symptoms as well as still being treated for that very illness and not simply be put out to pasture in a facility where the aim is to help you die with morphined comfort.
The fact that I have to chase around his oncologist to see where the cancer has gone and to see if it requires or can have treatment and then have to deal with the palliative care part of his care in two different facilities with two seperate teams of doctors is incredible. And this is the best Australia can do in 2009? I have lived in the United States where this just does not happen, no matter what stage of terminal illness you are at, you are given the facilities, hope and treatment should it be worth having and you aren't dismissed to a living morgue to be doped up on morphine until your body can no longer take it and you pass away. In fact, if treatment like what I experienced was given in the US, lawsuits would be flying all over the place and for good reason.
I am just one voice describing my experience as a carer, imagine a patient who can't speak for themselves or has nobody who can. There is alot that isn't being done by way of palliative care services in this state, and I realise there is a lack of funding, but terminally ill patients deserve so much more, and frankly, I worry about getting old or terminally ill here. Having to suffer such indignity, lack of care and nursing staff who are just doing their job here.
I want better for my father and whilst I realise you represent palliative care facilities in NSW, but there should be representatives who represent families and carers who may want to push hard enough like myself to improve the unacceptable situation in this state.
Regards,
Judge the situation for yourself, Have any of you experienced this type of neglect and poor standard of service for your loved one?
The Executive Officer
Palliative Care NSW
PO Box M48 Missenden Road
CAMPERDOWN NSW 2050
Dear Sir/Madam,
I wish to voice my dissapointment with Palliative Care services in NSW. There clearly are issues with these services, lack of funding, not enough staff and and inconsistancies in the standard of care from one facility to another.
In fact, if you happen to live in the wrong postcode you are discouraged or even refused consideration by another facility because you don't live in their geographical area, even if you can afford the service with the better reputation. Considering care in one facility maybe better than another (and I assure you this is the case), and should one have the best in private health cover, How is it that a public facility (ie Palliative Care) is able to deny you access to their facility? Something seriously stinks with the entire system if either an elderly or terminally ill patient with private cover cannot choose their own facility or doctors in that facility to treat them at the time in their life where they should be afforded this right.
I am a daughter of an Advanced Prostate Cancer patient who has been fighting for and alongside my father for a period of almost 5 years. I have fought to get him the best in doctors, specialists and treatments in this country and I have seen with my own eyes the lack of duty of care in alot of cases when it comes to the treatment of those with terminal illnesses - those the medical field have basically given up on and just want to shove into a palliative care facility because as in one practitioner's words to me - it's the end of the road.
It didn't matter that for 4 of those years, there was alot of misinformation, lack of communication and doctors that didn't seem to treat his illness aggressively and didn't diagnose changes in his condition which cost him his mobility and he was basically plugged with painkillers, it didn't even matter that I understand doctors are overloaded with patients and that even getting appointments for chemotherapy or radiotherapy or even his medical oncologist took weeks. But now he is in his final stage of his illness and the indignity he has to suffer not only from his illness but from lacklustre staff at faciliites who seem to promote a culture of "well this is a place people come to die and we'll treat pain but we won't bother addressing any other medical issues in conjunction with the particular illness" is glarlingly obvious and rather painful to watch.
But what I do have issue with is the definition of palliative care and how its practiced and how it appears to be governed.
a) Why are palliative care services only offered in conjunction with public hospitals? I understand palliative care is a fairly new concept in this country but I am surprised that private palliative care centres aren't offered in this country.
b) Why are those with private insurance not able to choose which public facility they wish to be treated at? Why are they told where they need to be treated and not given an option at which facility of their own choosing? And why do geographical boundaries exist? This I intend on pursuing with private insurance providers. Because if for instance a private patient from the south western suburbs isn't accepted into a facility in the eastern suburbs because they don't live in this area, then private insurance coverage is clearly a falsehood and offers no benefits to those suffering terminal illnesses.
Ideally all palliative care facilities should provide equally good care, but the fact is they don't. Why should my father be penalised because he lives outside a petty geographical area, after all he still lives in the Sydney metropolitan area.
I had been caring for my father at home with the help of my husband, brother and close friends who stepped up to the plate to help our family, Dad got a urinary tract infection from the incessant use of a catheter. I had him admitted into Fairfield Public Hospital. He had pain control issues and the hospital didn't want to know, and kept pressuring (and I don't mean suggesting, I mean pressure, constant) our family to have him admitted into Braeside. I had initially resisted as I had heard alot of terrible things about the hospital itself, it was a miserable place, I had heard from those I knew who had put their loved ones in their and either withdrew them or they had lost them quickly as treatment seemed to be, doping them to the eyeballs with hardcore painkillers.
I felt this psychologically would not be a good move, dad may have terminal cancer but he is only 67. How awful, being put into a place that supposedly offers palliative care, but no hope, just death from those much older than himself all around him in a haze of painkillers. It sure was the last road, even those that could have been helped or rehabilitated physically or mentally to live as well as they could, being left to die like lepers in a living morgue with the bare minimum being done, food, medicine and nothing more.
And this is whats left when you are deemed incurable and too old to live in society?
I had to my eventual regret placed my father into Braeside, after continual prodding and pressure from Fairfield Public Hospital, they didn't want to deal with him, they made it clear they wanted him out, they didn't have the facilities to deal with pain management and kept telling me over and over again they are a acute hospital and aren't able to treat him. They kept pressuring us to put him into Braeside with assurances that this was the best facility for my father. I knew then they were passing the buck and its only then I understood the whole procedure with the elderly and those terminally ill was. It seemed to me that hospital policy seemed to be, if you were over 70 and sick or terminally ill that you were told to go to Braeside. And I figured could it be any worse than the treatment he received at Fairfield Hospital?
Perhaps a pain management doctor could help him and I could bring him back home. But Fairfield did tell me that Braeside practiced no resusicitation, I thought this was illegal. How could it be that if someone had a heart attack they would not assist them? In other words if don't agree to this you cannot be admitted to Braeside, I discussed my concerns with Dr Megan Best at Braeside and she explained in greater detail, that a) my father wasn't deemed to be a cardiac risk and b) We could get him over to Fairfield Hospital if that was our wish.
What I found out was certainly an eyeopener. They were so desperate to get him to Braeside, as soon as the family agreed they wheeled him over in a wheelchair within an hour and from what I saw it seemed like just another hospital, except the smell of excrement and other bodily fluids overcame me, and all the patients were old and 90% were all asleep. To be fair, some nurses were very caring, but alot were just doing their job and quite a few were student nurses. Doctors were only seen when there was an issue with a patient and Dr Best who convinced us to give Braeside a shot was only in 2 days a week. This to me seemed to be a mobile nursing home or hospice. And it's not what I imagined palliative care to be. I can't speak for everyone and I am no doctor but the patients in the same ward as my father were in their 80's and were about to die, most were doped up the entire day and night and I had quit my job as an HR officer to look after my father as his carer, so I spent alot of time at Braeside and I got to see alot of what I didn't want to see.
Yes they should make my father comfortable, but my father despite his illness wasn't on his deathbed as yet and went through emotional turmoil each time a patient around him passed away and this was guaranteed twice a week. My father is terminally ill and required pain management control and he was placed there for a short stay, but somehow he was surrounded by death and by patients that could barely communicate with him they were under so much morphine and some slept 23 out of 24 hours and didn't touch the pittance they were fed. My father knew their stories from their relatives who came to visit. How can this atmosphere be good for any terminally ill patient with a will to live?
It seems like a lack of resources and just patient dumping the sick and the elderly together in a place waiting to die or be killed by the amount of painkillers given to them and little else. Now some relatives may wish this for their parents but not I. I wanted to give the best care for my father and keep him alive as much as I could whilst he was still very lucid, and had some kind of mobility, I wanted to bring him home to his family.
As soon as he went into Braeside his condition deteriorated rapidly, I would say a part of it was his illness and lack of care regarding it, Braeside didnt' care about his illness just his pain medication and partly the morbid, miserable atmosphere. In fact he would get so distressed they would need to give him something to calm him.
I would notice staff who didn't want to lift my father to take him to the toilet and would just tell them they he can only use a bedpan despite the fact that a week ago he was able to walk with the use of a frame, but they said, due to OH&S reasons they wouldnt' allow it. My father would cry and get distressed and would tell them, he is not an animal and wants to be assisted up onto the walking frame so that he could go to the toilet just a few feet away, yet they refused him on many occassions, until I questioned this. And I heard about OH&S over and over again, yet when he was at Fairfield Hospital this wasn't an issue, they did assist him and allowed him to use the walking frame to walk.
There were other occassions where the poor man soiled his bed because when he asked for assistance to go to the toilet he was told, they were busy and didn't have enough staff to help. I saw my father's spirit broken and I was very upset by watching him cry in shame and I felt his indignity. Meanwhile, during his stay there he continued to get infections, and considering his illness they didnt' see an urgent need to get him the acute care he required, for instance, they didnt' spot a urinary tract infection, yet my brother and I knew the symptoms from the previous experience, the nurse we told at the desk that we were concerned he may have another didn't seem to worry about his 104 F temperature and waited till the next morning to inform someone.
The poor man suffered a night of delirium and wanting to get out of bed. And he continued to get infections, I knew for a fact his sheets weren't changed daily and I would commonly see urine stains on them and on his clothing. The man was ill with infections and would soil his underwear, to add insult to injury the nursing staff would simply put it in a bag and tie it. So when I took these items of clothing home, imagine my horror to discover faeces inside his underwear, not even common sense was practiced where for OH&S reasons they should rinse out his underwear before tying it in a bag. I didn't take his laundry home each day to wash, sometimes it would be a few days, yet this would be sitting at the side of his bed or in his cupboard. Disgusting. Palliative Care indeed.
The final straw came when 3 weeks ago I walked into Braeside at 9.30pm and my father's room was opposite to the nurses desk. I had counted 5 nursing staff at the desk just chatting amongst themselves. The light was turned out in my father's ward, I saw my father half way out of the bed moaning at the top of his voice, almost screaming, I walked over to him switched on his light and his face was bright crimson, he kept speaking incohrently, asking me to give him tablets and to help him and he continued to moan, I was horrified and rushed to the desk and said, What on earth is going on here? my father is very ill? I want the doctor here now. I was advised he had an infection and was given oral antibiotics - they obviously were not working, he was suffering so much and he was ignored, by no less that 5 nursing staff. I said he needs acute care now. I want him transferred to Fairfield Hospital asap. I was told they needed to call the doctor, and after they had done so told me that the doctor can give him anitbiotics intravenously and they will check on him tommorow morning. Not good enough, he was burning, had an obvious very high temperature and needed the care now. I was told they could give him antibiotics intravenously but not fluid through the drip as he was dehydrated badly they didn't have a drip? not does it appear a doctor on hand as I was forced to negotiate my father's care in an urgent situation with a doctor over the phone.
I refused to accept this and I advised I have an enduring power of attorney and my wish is for him to be transferred to Fairfield. They then called the doctor back who spoke to me and tried to do everything in his power not to have my father transferred. I finally said, Doctor are you telling me that you will not organise for an ambulance? Of course he said no, and said he would organise for an ambulance. It took 1 hour for an ambulance to pick him up - Fairfield Hospital is next door, less than 3 minutes away, yet I had to wait for 1 hour. It appears that my father had a bad infection in his left leg where he had dvt and he had a blister on his heel that broke open with liquid pouring out of his leg.
Is this what palliative care is? I vowed never to admit him into Braeside again, I am convinced I saved my father's life that night and it had nothing to do with the palliative care offered at Braeside, the fact is, it wasn't offered adequately. And I've wondered how many other patients are dealt with in this way? Palliative care may ideally be for caring and the comfort of those, but I am not convinced that a terminally ill cancer patient should be placed in an area where this is the standard of care. I am not in favour of a palliative care system that offers morhpine but little else and still does not treat the underlying illness with regards to those suffering from one, as opposed to the elderly that are about to die in a week or so time.
There seems to be shortfall that isn't addressed properly, my father may require palliative care, ie pain management but he is not a right off and I will not accept him being treated as one, the illness itself should still require treatment and monitoring which is NOT being done by the so called palliative care facility and I am certain I am not the only one who realises this and expects more by way of care for those who deserve better at this time in their lives.
And this is how those who have been given a life sentence tend to pass away, their underlying illness isn't being treated at facilities such as Braeside, and they only focus on end of life and pain mangement care, therefore, once you stop treating the illness or monitoring it, it does end up killing one sooner than if they had received continual treatment for their illness (if possible) and the fact is, terminally ill patients should be treated at a facility where they do have care for their pain management and symptoms as well as still being treated for that very illness and not simply be put out to pasture in a facility where the aim is to help you die with morphined comfort.
The fact that I have to chase around his oncologist to see where the cancer has gone and to see if it requires or can have treatment and then have to deal with the palliative care part of his care in two different facilities with two seperate teams of doctors is incredible. And this is the best Australia can do in 2009? I have lived in the United States where this just does not happen, no matter what stage of terminal illness you are at, you are given the facilities, hope and treatment should it be worth having and you aren't dismissed to a living morgue to be doped up on morphine until your body can no longer take it and you pass away. In fact, if treatment like what I experienced was given in the US, lawsuits would be flying all over the place and for good reason.
I am just one voice describing my experience as a carer, imagine a patient who can't speak for themselves or has nobody who can. There is alot that isn't being done by way of palliative care services in this state, and I realise there is a lack of funding, but terminally ill patients deserve so much more, and frankly, I worry about getting old or terminally ill here. Having to suffer such indignity, lack of care and nursing staff who are just doing their job here.
I want better for my father and whilst I realise you represent palliative care facilities in NSW, but there should be representatives who represent families and carers who may want to push hard enough like myself to improve the unacceptable situation in this state.
Regards,
Sunday, August 2, 2009
A Dangerous Road for Nurses to Tread
Here is an interesting article from The Times. What are your thoughts?
The Royal College of Nursing’s shift to becoming ‘neutral’ on assisted suicide is a disgrace
I am astonished — there is no other word for it — that the Royal College of Nursing has decided to move from a position of opposing assisted suicide to one of neutrality. This decision is simply not rooted in firm ground: it has emerged from the RCN Council like Athena springing from the head of Zeus. Worse still it seems to involve some potentially dangerous thinking.
It would appear that the RCN’s “consultation” with its members on its website produced “over 1,200 responses”. But the RCN has 390,000 members. No one would expect a majority — or even a sizeable minority — of members to respond: nurses are very busy people caring for sick patients and few of them have either the time or the inclination to pay much attention to the website. But to base a serious shift in the college’s stance on the opinions of 0.3 per cent of the membership is nothing short of irresponsible. It is reminiscent of some of the worst features of bad trade union activity in the 1960s and 1970s.
The message conveyed in a declaration of neutrality could encourage nurses to believe that the college thinks there are no serious ethical issues involved.
The general secretary of the college has been quoted as saying that the change in stance from opposition to neutrality will enable nurses “to engage in dialogue” with their patients on assisted suicide.
Let us put the spin aside and be clear what this means. Encouraging or assisting suicides is a criminal offence in this country, as it is in most others. Were a nurse to be convicted of such an offence, that would of course put into question his or her fitness to practise. Some people may not find this position to their liking, but we simply cannot have nurses — or anyone else for that matter — engaging in “dialogue” about something that is against the law. For the RCN Council to imply anything different is, frankly, dangerous.
If dialogue means listening to a patient’s anxieties about his or her medical condition and discussing how that can be better alleviated (including why committing suicide isn’t the way forward), fair enough. But that has been a normal part of nursing practice for as long as anyone can remember and it is not at all clear how it can be affected by the arbitrary shift in the college’s position on assisted suicide.
The only dialogue on this subject that nurses can engage in with patients is to point out that assisting suicides is illegal and that they cannot have any part in it. Nurses are as bound by the law on not assisting suicides as is any other citizen and they should remember that.
Those who are involved in healthcare know that appeals to be helped to die made by seriously ill patients are not uncommon, but invariably are a cry for help or reasssurance rather than a serious request. Sometimes the underlying issue is not even their health but something like money or personal relationships.
I recall the story of a man with a wife and young children who was suffering from a serious and disfiguring facial tumour. He pleaded to be allowed to commit suicide. Instead he was treated by a palliative care team. He got better and returned to his family, only for his wife to die suddenly. If he had committed suicide the children would have been orphans.
There is a possibility that the college is planning to go further on the issue of neutrality, by talking to the MSP Margo MacDonald about her proposals for legalising assisted suicide in Scotland. Ms MacDonald says that she would be “very grateful for the nurses’ input”. She goes on to say that “the RCN recognises that there is a public mood to deal with choices at the end of life”.
It is not clear whether Ms MacDonald is saying this on her own authority or whether it is what she has been told by the college’s leaders. But it is clear that the RCN should not be providing input to the development of proposals for assisted suicide. Is this what is meant by neutrality?
We should all be concerned about these developments. I say this not only because I oppose the legalisation of assisted suicide, which I believe would put thousands of vulnerable sick people at risk of self-harm, but also because it looks very much as though the RCN Council is using a microscopic sample of nursing opinion to steer the college on to a politically controversial course.
My experience of many years spent in the nursing profession tells me that the majority of nurses remain opposed to helping their patients to kill themselves and are more concerned with improving their healthcare. The RCN Council appears to think otherwise, but a judgment based on ignorance of what more than 99 per cent of nurses think hardly carries conviction.
If the college is to convince its members that it is not using them for its own political purpose, it should carry out a far more searching consultation.
Baroness Emerton is a crossbench peer and Fellow of the Royal College of Nursing
The Royal College of Nursing’s shift to becoming ‘neutral’ on assisted suicide is a disgrace
I am astonished — there is no other word for it — that the Royal College of Nursing has decided to move from a position of opposing assisted suicide to one of neutrality. This decision is simply not rooted in firm ground: it has emerged from the RCN Council like Athena springing from the head of Zeus. Worse still it seems to involve some potentially dangerous thinking.
It would appear that the RCN’s “consultation” with its members on its website produced “over 1,200 responses”. But the RCN has 390,000 members. No one would expect a majority — or even a sizeable minority — of members to respond: nurses are very busy people caring for sick patients and few of them have either the time or the inclination to pay much attention to the website. But to base a serious shift in the college’s stance on the opinions of 0.3 per cent of the membership is nothing short of irresponsible. It is reminiscent of some of the worst features of bad trade union activity in the 1960s and 1970s.
The message conveyed in a declaration of neutrality could encourage nurses to believe that the college thinks there are no serious ethical issues involved.
The general secretary of the college has been quoted as saying that the change in stance from opposition to neutrality will enable nurses “to engage in dialogue” with their patients on assisted suicide.
Let us put the spin aside and be clear what this means. Encouraging or assisting suicides is a criminal offence in this country, as it is in most others. Were a nurse to be convicted of such an offence, that would of course put into question his or her fitness to practise. Some people may not find this position to their liking, but we simply cannot have nurses — or anyone else for that matter — engaging in “dialogue” about something that is against the law. For the RCN Council to imply anything different is, frankly, dangerous.
If dialogue means listening to a patient’s anxieties about his or her medical condition and discussing how that can be better alleviated (including why committing suicide isn’t the way forward), fair enough. But that has been a normal part of nursing practice for as long as anyone can remember and it is not at all clear how it can be affected by the arbitrary shift in the college’s position on assisted suicide.
The only dialogue on this subject that nurses can engage in with patients is to point out that assisting suicides is illegal and that they cannot have any part in it. Nurses are as bound by the law on not assisting suicides as is any other citizen and they should remember that.
Those who are involved in healthcare know that appeals to be helped to die made by seriously ill patients are not uncommon, but invariably are a cry for help or reasssurance rather than a serious request. Sometimes the underlying issue is not even their health but something like money or personal relationships.
I recall the story of a man with a wife and young children who was suffering from a serious and disfiguring facial tumour. He pleaded to be allowed to commit suicide. Instead he was treated by a palliative care team. He got better and returned to his family, only for his wife to die suddenly. If he had committed suicide the children would have been orphans.
There is a possibility that the college is planning to go further on the issue of neutrality, by talking to the MSP Margo MacDonald about her proposals for legalising assisted suicide in Scotland. Ms MacDonald says that she would be “very grateful for the nurses’ input”. She goes on to say that “the RCN recognises that there is a public mood to deal with choices at the end of life”.
It is not clear whether Ms MacDonald is saying this on her own authority or whether it is what she has been told by the college’s leaders. But it is clear that the RCN should not be providing input to the development of proposals for assisted suicide. Is this what is meant by neutrality?
We should all be concerned about these developments. I say this not only because I oppose the legalisation of assisted suicide, which I believe would put thousands of vulnerable sick people at risk of self-harm, but also because it looks very much as though the RCN Council is using a microscopic sample of nursing opinion to steer the college on to a politically controversial course.
My experience of many years spent in the nursing profession tells me that the majority of nurses remain opposed to helping their patients to kill themselves and are more concerned with improving their healthcare. The RCN Council appears to think otherwise, but a judgment based on ignorance of what more than 99 per cent of nurses think hardly carries conviction.
If the college is to convince its members that it is not using them for its own political purpose, it should carry out a far more searching consultation.
Baroness Emerton is a crossbench peer and Fellow of the Royal College of Nursing
What's your experience and understanding of Palliative Care in Australia?
Here is an excerpt from the Statement on Clinical Practice Guidelines for Quality Palliative Care from The American Academy of Hospice and Palliative Medicine (AAHPM):-
"The goal of palliative care is to prevent and relieve suffering, and to support the best possible quality of life for patients and their families, regardless of their stage of disease or the need for other therapies, in accordance with their values and preferences. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision-making and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care.
Palliative care is operationalized through effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care according to patient/family needs, values, beliefs and culture(s). Evaluation and treatment should be comprehensive and patient-centered, with a focus on the central role of the family in decision-making. Palliative care affirms life by supporting the patient and family's goals for the future, including their hopes for cure or life prolongation, as well as their hopes for peace and dignity throughout the course of illness, including the dying process and death. Palliative care aims to guide and assist the patient and family in making decisions that enable them to work toward their goals during whatever time they have remaining.
Comprehensive palliative care services often require the expertise of various providers in order to adequately assess and treat the complex needs of seriously ill patients and their families. Members of a palliative care team may include professionals from medicine, nursing, social work, chaplaincy, nutrition, rehabilitation, pharmacy and other professional disciplines. Leadership, collaboration, coordination and communication are crucial for effective integration of these disciplines and services."
The above is what I would agree is Palliative Care, but in Australia it seems, things are done a little differently. Whilst its true the goal is to focus on comfort and pain relief, it seems there seems to be a shortfall in being able to still treat the underlying illness (if possible and if desired by the patient) - this doesn't seem to be a priority nor a interest in Palliative Care settings in Australia. The buck seems to be passed from medical oncologist/Dr to Palliative Care.
It seems the system is underfunded, dysfunctional and there appears to be an inconsistancy in service delivery from one facility to another. Curiously it seems Palliative Care facilities seem to be basically run in coordination with public hospitals which isn't always a good thing, considering the state of our public hospitals.
I have first hand experienced more than one terrible experience in palliative care in a facility in Sydney's South West (Braeside) and withdrew my father from it.
What are your experiences with Palliative Care in Australia? I'd love to hear your experiences and thoughts on facilities in this country.
"The goal of palliative care is to prevent and relieve suffering, and to support the best possible quality of life for patients and their families, regardless of their stage of disease or the need for other therapies, in accordance with their values and preferences. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision-making and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care.
Palliative care is operationalized through effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care according to patient/family needs, values, beliefs and culture(s). Evaluation and treatment should be comprehensive and patient-centered, with a focus on the central role of the family in decision-making. Palliative care affirms life by supporting the patient and family's goals for the future, including their hopes for cure or life prolongation, as well as their hopes for peace and dignity throughout the course of illness, including the dying process and death. Palliative care aims to guide and assist the patient and family in making decisions that enable them to work toward their goals during whatever time they have remaining.
Comprehensive palliative care services often require the expertise of various providers in order to adequately assess and treat the complex needs of seriously ill patients and their families. Members of a palliative care team may include professionals from medicine, nursing, social work, chaplaincy, nutrition, rehabilitation, pharmacy and other professional disciplines. Leadership, collaboration, coordination and communication are crucial for effective integration of these disciplines and services."
The above is what I would agree is Palliative Care, but in Australia it seems, things are done a little differently. Whilst its true the goal is to focus on comfort and pain relief, it seems there seems to be a shortfall in being able to still treat the underlying illness (if possible and if desired by the patient) - this doesn't seem to be a priority nor a interest in Palliative Care settings in Australia. The buck seems to be passed from medical oncologist/Dr to Palliative Care.
It seems the system is underfunded, dysfunctional and there appears to be an inconsistancy in service delivery from one facility to another. Curiously it seems Palliative Care facilities seem to be basically run in coordination with public hospitals which isn't always a good thing, considering the state of our public hospitals.
I have first hand experienced more than one terrible experience in palliative care in a facility in Sydney's South West (Braeside) and withdrew my father from it.
What are your experiences with Palliative Care in Australia? I'd love to hear your experiences and thoughts on facilities in this country.
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