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Rural palliative care and a good death

Posted Nov 29 2010 12:00am
Much media attention is focused on euthanasia. I believe that much more attention needs to be focused on palliative care. There is no reason to die in pain, and no reason to fear death.

A brief released by the  CHPCA  states

"only 16% to 30% of Canadians who die currently have access to or receive hospice palliative and end-of-life care services
(PDF file,  click here )

Too many end up in emergency rooms, facing issues such as abdominal pain dyspnea, pneumonia, malaise, fatigue, pleural effusion, symptoms that can be managed in other settings, with an integrated, team approach in which patients and family members are integral parts of the team.

The brief cites an Ontario study that tells us 
  • too many die in ERs, 40% in the last two weeks of life, 41% in long-term care, 84% of Ontario cancer patients in the last six months of life.
An ER isn't the right place to die, nor is it a place one needs visit if declared palliative, with the benefit of a good Hospice-focused team.

I have thought long and hard about having a good death. I am more vulnerable if I live in rural Canada.
We know that those will ill-health are more vulnerable if they  live in poverty .

The  CHPCA  cites several terrific Hospice centres:
Victoria Hospice (17 beds), The Edmonton Regional Palliative Care Program (57 beds), The Niagara West Palliative Care Team (used by LHINs in Ontario), The New Brunswick Extra Mural Program.
You can see that these are in fairly major centres. We know that good programs vary province to province. We need to take the best of all and integrate it.


I bought some materials from Victoria Hospice, now in its  30th  year of operation. They publish manuals, and many helpful resources. 


One research article is telling
Using a quality framework to assess rural palliative care. by D Goodridge - 2010

First, what are the measures of high-quality palliative care?

It is characterized as care that addresses the objective of being:
  1. safe
  2. effective
  3. patient-centred
  4. timely
  5. efficient
  6. equitable.
Compared to urban centres, rural health care is less complex, and less able to measure the standards and benchmarks that we expect in the city. The scope and scale of rural healthcare differs greatly. I have seen this in the parallels in education, having taught in both large and small school boards. This varies, of course, from hospital to hospital, from LHIN to LHIN. Inner city Toronto ERs have many cases of bad deaths , as much as rural Canada.

The low volume of clients/patients, the lack of expertise of specific activities, limited availability of qualified support staff (17 - 20% vacancies in nursing staff, I've heard. Check small town want ads...), inadequate information technology, insufficient human resources, over worked health care providers.

All of these work to compound the delivery of health care in rural Canada.
In rural Canada there may not be an interactive pallitiave care team that will work together to relieve pain, educate family members about the differences between prolonging life and quality of life, what to expect as your loved one dies, management of terminal symptoms and complex care.

Barriers to rural palliative care
  • difficulty recruiting staff
  • retaining quality staff
  • lack of funding for services (a function of distance and time)
  • lake of awareness of existing services (no one told me about hospice)
  • inability to afford services or costs
  • unmet information needs of patient and family
  • reliance on informal networks (with misinformation?)
  • burdens on caregivers
  • lack of cultural diversity
  • lack of communication between caregivers, patient, community, Primary Care staff
  • limitations in staff knowledge, interest, skills (especially PSWs, who need to be regulated)
  • frustration with physician or nurse colleagues who rely on myth (e.g., pain management)
  • lack of information on pain management ( appropriate prescriptions, monitoring, titrating, rotating potent medications used in palliative care)
  • lack of geriatricians and palliative care physicians.

Pain anxiety and death anxiety can be confused with one another. It is important that caregivers and care recipients face the end-of-life deeper questions, which will ensure a death with dignity. We do so much research in this field and we ignore much of it as well. We know what works and what does not. We know how to relieve pain in most cases. Many fear death. 

Asking these questions will help improve the quality of life and the palliative care of a patient, but who in small hospitals, or providing home care, are qualified to provide psychosocial discussions, a requirement of a good death, a death with dignity?


*A  good death  is one in which the four dimensions of good death are met
  1. Physical (pain control, breathing, fatigue, bedsores), 
  2. Spiritual (accepting death, doing a life review, seeing meaning on one's life, finding peace), 
  3. Social (being conscious; communicating with family/friends, careworkers; communicating needs, wishes; sharing thoughts, feelings; having closure; saying farewell; a quiet, private atmosphere) and 
  4. Emotional/psychological needs (accepting help; not being a burden; being peaceful; having self-esteem; enjoying simple pleasure by releasing hope by gaining peace; making choices).
Whether you are at home, in a Palliative Hospice setting, or in long-term care, we deserve to have a good death. We should not, in the case of a palliative care diagnosis, to be placed in an emergency vehicle and shuttled to emergency. With clear  advance care directives , families need not be surprised.

Who will sit down with a family and discuss advance care directives ? In rural Canada, very few. Adult caregivers may be unable in a situation to discuss the difference between force feeding, and stopping treatment, as opposed to letting nature take its course. I've read about 90-something women who are admitted into emergency, given CPR, which breaks their rib cages and causes more pain. Ignoring DNR orders is a crucial aspect of a typical bad death.



A nurse ethicist on end of life care : “The fact that families feel that they haven’t felt that they’ve been part of the decision-making processes regarding end-of-life care and wishes, means that something is definitely wrong with how the health care team is functioning, at a very basic level.” A Bad Death  "A few days ago a 70ish-year-old patient arrived by EMS, end-stage liver cancer, sent in by her family because she was “not feeling well”. From home. No advance directives. She was frail and obviously unwell, jaundiced, her abdomen distended by  ascites ..." End-of-life care for dementia patients : “But dementia does kill, and caregivers can request better end of life care for people with severe dementia by asking some tough but crucial questions.” 


Abstract
INTRODUCTION: High-quality palliative care may remain out of reach for rural people who are dying. The purpose of this study was to explore the opportunities and issues affecting the provision of high-quality palliative care from the perspective of nurses employed in two rural health regions.
METHOD: Using an interpretive descriptive design, focus groups and in-depth individual interviews of 44 nurses were conducted.
RESULTS: Descriptions of challenges and opportunities fell into three themes: effectiveness and safety, patient-centredness, and efficiency and timeliness. Patient-centredness was seen as a major strength of rural palliative care. Major challenges included provision of adequate symptom management and support of home deaths. The scarcity of health human resources and the negative impact these shortages had on all dimensions of palliative care quality consistently underpinned the discussions.
CONCLUSION: Implementing outcome measurements related to symptom management and home deaths may be a critical foundation for enhancing the quality of rural palliative care
Policy Brief on Hospice Palliative Care - Quality End-of-Life Care?  It Depends on Where you Live... and Where you Die.
Released during the 2010 Canadian Hospice Palliative Care Conference in Ottawa, ON October 28 - 31st, 2010, this policy brief highlights the factors that affect the availability, quality and accessibility of hospice palliative end-of-life care in Canada, and proposes a more integrated, systems approach that will help ensure all Canadians have access to high quality hospice, palliative and end-of-life care. 

End-of-Life Concerns and Care Preferences: 
Congruence among Terminally Ill Elders and Their Family Caregivers
Abstract: 
This study examined the end-of-life challenges, concerns, and care preferences of terminally ill elders and their family caregivers, with a focus on areas of congruence and incongruence. Ten elders and 10 family caregivers participated in separate, semi-structured, face-to-face interviews. Data analysis included team coding and thematic analysis, guided by an a priori set of categories based on the study questions. Shared challenges and concerns included experiencing decline, managing pain and discomfort, and living with uncertainty. There was also congruence regarding end-of-life care preferences, specifically the importance of quality care, treatment with dignity and respect, and avoiding unnecessary life-sustaining treatment. Areas of incongruence included the elders' difficulties in accepting dependence, their fears of becoming a burden, and desire to be prepared for death. Family caregivers were most concerned with providing adequate care to meet the elders' physical and spiritual care needs. Open family communication was associated with greater congruence. The authors discuss implications of these findings for research and intervention.



La Belle Mort en Milieu Rural: a report of an ethnographic study... by AM Veillette - 2010
La Belle Mort en Milieu Rural: a report of an ethnographic study of the good death for Quebec rural francophones
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