Ethical issues in PALLIATIVE CARE Rels 300 / Nurs 330 February 2016 Ethical issues in PALLIATIVE CARE

Of Life and Death, Ch. III Palliative Care The task of the Senate committee was to evaluate the ethical, social, legal and medical issues related to assisted suicide and euthanasia. What are the alternatives to assisted suicide and euthanasia? what if the only alternatives are pain, suffering, despair, isolation, and home caregiver burnout? 300/330 - appleby

Dr. Neil Macdonald, Montreal “One cannot in a moral society consider terminating a fellow citizen’s life, if that citizen is suffering because of lack of access to good palliative care. Regardless of one’s views on euthanasia, one must concur that, as a first principle, impeccable care for dying citizens must be ensured.” this Committee was convened in 1994, reporting in 1995 the Canadian Palliative Care Association was founded in 1991 how accessible do you think palliative care was in 1994? 300/330 - appleby

Reports of witnesses the need for palliative care is great palliative care improves the care of the dying and enhances their quality of life palliative care is available to only a small percentage of dying people palliative care services are very unevenly distributed across Canada 300/330 - appleby

Reports of witnesses palliative care most often focuses on cancer patients to the neglect of people dying of other diseases and conditions palliative care services are severely under-funded some health care professionals receive little to no training in palliative care there is very little research on pain relief and symptom management 300/330 - appleby

Committee Recommendations on Palliative Care Make palliative care programs a top priority in health care system restructuring Develop and implement national guidelines and standards. Train health care professionals in all aspects of palliative care. Develop an integrated approach to palliative care that coordinates institutional, hospice and home care with respite services and volunteer support. Expand and improve palliative care research, especially in pain control and symptom relief. 300/330 - appleby

GOALS of palliative care Hospice palliative care aims to: treat all active issues prevent new issues from occurring promote opportunities for meaningful and valuable experiences, personal and spiritual growth, and self-actualization. Hospice palliative care may complement and enhance disease-modifying therapy or it may become the total focus of care. 300/330 - appleby

Palliative care’s central values: The intrinsic value of each person as an autonomous and unique individual. The value of life, the natural process of death, and the fact that both provide opportunities for personal growth and self- actualization. Care is guided by quality of life as defined by the individual. 300/330 - appleby

Dr. Donald Low Mount Sinai Hospital, Toronto “Eight days before he died of a brain tumour, Dr. Donald Low, the micro- biologist credited with guiding Toronto through the 2003 SARS crisis, makes a final plea for Canada to change the law to allow assisted suicide.” http://www.youtube.com/watch?v=q3jgSkxV1rw [7:14] http://www.cbc.ca/news/canada/toronto/sars-doctor-donald-low-s- posthumous-plea-for-assisted-suicide-1.1866332 [http://youtu.be/q3jgSkxV1rw] 300/330 - appleby

end-of-life pain End-of-life Pain

Chapter 6: Physical Comfort end-of-life pain Chapter 6: Physical Comfort http://as800.chcr.brown.edu/pcoc/resourceguide/chapter6.pdf [http://as800.chcr.brown.edu/pcoc/]

Assessing Pain

Wong-Baker FACES Pain Rating Scale

Of Life and Death http://www. parl. gc “Many witnesses repeatedly indicated that . . . sufficient medication to control pain is not being provided. “Several witnesses suggested this is due to a lack of training and education of medical professionals in the area. Others stated that some medical professionals fear liability if the administration of drugs to control pain results in a hastening of death. “Finally, fear of addiction of patients was also offered as a further explanation for the failure to provide adequate pain control in some circumstances.”

CNA – Position Statement Providing Nursing Care at the End of Life September 2008 Excerpt from statement: “Pain and symptom management” http://www.cna-aiic.ca/CNA/documents/pdf/publications/PS96_End_of_Life_e.pdf “Appropriate pain and symptom management is a key component of end-of-life care and addresses one of the common concerns expressed by dying individuals: a fear that they will experience pain and suffering. Although increasing doses of pain medication may, in very limited instances, have a secondary and unintended effect of hastening death, this action is ethically justifiable if the dosage of pain medication is adjusted appropriately and the primary intent is to relieve pain.”

Palliative Care Specialist Lynn Hallarman, MD, tells the story of when she realized she was doing pain assessments wrong as an intern. She asked basic questions that didn't get to the core of the problem for the patient… https://www.capc.org/providers/palliative-care-videos-podcasts/ 300/330 - appleby

Video clip: Dying for Care http://www.pallium.ca/infoware/DFC_TranscriptELVEng_March2006.pdf Video clip: Dying for Care

October 2014 CHPCA Fact Sheet Only 16% to 30% of Canadians have access to palliative care services With significant disparities across the country Almost 70% of Canadian deaths occur in hospitals instead of at home or in palliative care settings Chronic diseases account for 70% of all deaths in Canada 24% of seniors have 3 or more chronic conditions In 2012, a poll found that 86% of Canadians have not heard of advance care planning Only 9% had spoken to a healthcare provider about their wishes The RCPS established palliative care as a subspecialty in 2014 The CNA established a palliative care nursing policy in 2008 300/330 - appleby

What have we learned? Canadians have freedom to make their own end-of-life care choices, including assisted dying, only if there are real alternatives If 70% or more Canadians lack access to specialized palliative care services and healthcare providers, then it is likely that they will either: Experience unrelieved pain, discomfort and suffering in their dying process; OR Seek assistance in dying earlier than they might have wishes had hospice and palliative care services been an option 300/330 - appleby

How much change has there been since the Senate Committee Report? 75% of deaths occur in hospitals 5% of Canadians have access to palliative care services 90% of palliative care services are accessed by cancer patients – although cancer only accounts for 25% of all deaths in Canada Very few healthcare educations programs include palliative care in their training None of the 1995 Senate Report recommendations has been fully implemented 70% of deaths occur in hospitals 16% to 30% of Canadians have access to palliative care services Palliative care services better meet the needs of cancer patients than chronically ill patients at the end of life There are now physician and nursing palliative care specialties More palliative care training is included in healthcare education programs How much change has there been since the Senate Committee Report? 300/330 - appleby