End Stage Renal Disease and Hospice Palliative Care

Helo from the National Hospice Palliative Care Organization, and the preconference seminar titled "Hospice and Palliative Care for Dialysis Patients: Past Successes and Remaining Challenges" in Denver Colorado,

Seminar sponsored by Mid-Atlantic Renal Coalition and the National End of Life Coalition. Presenters included nephrologists from the UK, Canada and the US, as well as nurses and social workers from the US. Attendees represented the interprofessional team, and equal representation for the Hospice Palliative Care and the Renal/Dialysis communities.

It was intriguing to hear about the evolution of thinking and practice within the renal community, the research that has and is being done to further develop knoweldge and direct best practice, and the collaboration between the hospice palliative care and the renal communities.

The topics addressed included:

• The burden of symptoms experienced by patients with end stage renal disease (ESRD).
• Pain and Symptom management, specifically some guidelines for use of medications .
• Dialysis is life prolonging not curative.
• Decision to withdraw from dialysis does not always occur prior to death, when it does, it is often because burden is greater than the benefit, dialysis is unable to keep blood levels within the norms, and decrease in funtioning.
• Discussions about end of life issues are often difficult and usually do not happen.
• Patients want to have end of life discussions.
• Significant discussion about the need to address the issue of prognosis, severity of illness, and decisions to stop dialysis BEFORE starting dialysis. How this discussion can best occur, etc. (Reminded me of the discussion about needing to discuss end of life issues with patients at time of diagnosis with dementia related illnesses and definately before being admitted to a facility.)
• Research to help identify those patients who will benefit from dialysis and those who will not benefit from dialysis.
• Discussion of "conservative" management of patients over 75-80 years of age. Conservative managment outlined excellent hopsice palliaitve care (similar to addressing the 8 domains of care/common issues highlighted in the CHPCA Model to Guide HPC) with emphasis by the nephrology team on disease management.
• Discussion as to who is best to provide this care, is it the renal community who are already involved and have developed deep relationships, or is it the hpc community.

My conclusions:

Exciting to see collaboration and cross pollination between the two communities! Both communities will benefit from the expertise of the other!

In the coming years we will see more research and from that develop clear guidelines for use in this population.

My hope: I will incorporate this information when I care for patients with end stage kidney disease, and consider this as I plan ongoing education.

My favorite resource: GREAT WEBSITE: http://www.kidneyeol.org/

A cool experience: meeting Alex Harper (nurse) and her interprofessional team from St Pauls hospital in Vancouver BC who are starting a renal palliative care program!!!! Way to go!

A joyful moment: watching Dr. Alvin Moss, aka "WOODY" address the group. This gentleman has such a contagious love and enthusiasm for his field, and greets the topic with the enthusiasm of a kid who has just discovered a chocolate factory!

Tomorrow the NHPCO conference starts.

Kath

The Arbutus Tree....

The Arbutus tree - Growing on the edge of land and sea, in rough and rocky conditions, thrown and tossed by the winds; the eczema like reddish brown bark peeling off in papery flakes, stands as a symbol of strength, commitment, perseverance, determination and survival, amidst so many adversities. In these ways the Arbutus tree symbolizes the strength, beauty, and uniqueness of the human spirit and our ability to grow in the midst of suffering; and to live fully, even in the face of death and dying.

Christine Piercy writes, "The Arbutus tree represents that place between life and death, often perched precariously at the meeting place of land and ocean. So it is with those who are dying and those who care for them, as the dying hover in this place of transition between life and death. Those of us who encircle them may long to bring them back into life, or wish that death would take them from this intensely painful place of 'in-between'. Is it possible that, like the Arbutus tree, there can be growth and beauty in such a place?"

Obama’s health care plan – Reimbursing physicians for discussing end of life treatment

As a hospice palliative care nurse I was eager to hear about Obama’s health care plan regarding end of life issues. I was naively surprised to read media reports suggesting Obama was going to bring in “death panels”, and “push the elderly to early death”. From my read, the bill simply allows physicians to be reimbursed for discussions with patients about end of life issues, and advanced directives.

Stewart Florsheim, a board co-chair of Compassion & Choices of Northern California, an organization that helps the terminally ill make end-of-life decisions wrote:

“… Section 1233 simply ensures Medicare reimbursement for voluntary consultations about end-of-life treatment between patients and their medical practitioners every five years, or more often in the case of a life-threatening change. The consultations might include discussions about hospice, options for treatment (including pain management) and the importance of having an advance directive. The bill would help validate and support the work of palliative care doctors whose services are often subsidized by the rest of the hospital because they do not generate much revenue.” See
http://www.jweekly.com/article/full/39774/cruel-rumors-about-death-panels-have-no-place-in-health-care-debate/ for the complete article.

Physicians are in a unique relationship, and have the opportunity to provide valuable information and to support individuals to make informed decisions. Without advanced discussion people may not have the blessings of: discussing their illness, understanding possible outcomes of exacerbations of their illness, and making informed decisions in advance. Rather, they may die “unexpectedly” (or so it seems) in emergency departments/specialty care units/acute care wards - all too often in crisis mode.

I hope that the National Hospice Palliative Care Organization and those working in Hospice and Palliative Care in the USA will help the Americans understand that discussion and preparation is part of excellent health care. This may also lead to the discussion that death in the ICU or other acute care settings, with all the bells and whistles may not be best “end of life care”!

I also hope that Canada will follow Obama’s lead and reimburse our physicians for discussing end of life care and advanced directives with our elderly and with others whose physical condition is unstable!

Kath

Review of decision making following Hurricane Katrina

Last weekend the New York Times published an excellent article by Sheri Fink about the events that transpired at the Memorial Medical Center in the days following Hurricane Katrina. http://www.nytimes.com/2009/08/30/magazine/30doctors.html?_r=1

Sheri researched this story since the hurricane four years ago. As I read the 13,000 word article, I understood more clearly the incredible challenges facing doctors, nurses, patients, and family members during this crisis.

It is a good thing for us to revisit any such situation and examine how to improve our response in future crisis, however, I am personally unable to criticize any individual for their commitment, caring, endurance, and the challenging decisions that were carried out in the most difficult of circumstances. I also empathize with patients and families who did not understand decisions that were made.

I highly recommend this article.

Kath