Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Palliative Care for People Living with HIV/AIDS
May-June 2002, Vol. 4, No. 3

THIS IS AN ARCHIVED DISCUSSION.

Messages:

1. Welcome to Dr. Peter A. Selwyn! by Karen Heller, 5/23/02
      re: Welcome to Dr. Peter A. Selwyn! by Dr. Peter A. Selwyn, 6/3/02

2. Palliative Care for People Living with HIV/AIDS by Sandy Stacy , 7/3/02
       re: Palliative Care for People Living with HIV/AIDS by Dr. Peter A. Selwyn 7/3/02

3. AIDS Hospice and how we have evolved by Sandy Stacy 6/5/02

Your News and Announcements

1. MNRS adds New Research Section by Deborah Bruley 5/31/02

Archived Issues:

1. Palliative Care in Southern New Jersey by Marilyn Cameron-Ferenz 6/5/02
      Re: Palliative Care in Southern New Jersey by Pamela Parrish 6/16/02

2. Palliative Care in Nursing Homes by Pamela Parrish 6/16/02

3. Puchalski's FICA published here by Anna Romer 6/18/02

MESSAGES:

Subject: Welcome to Dr. Peter A. Selwyn!
Topic: Palliative Care for People Living with HIV/AIDS
From: Karen Heller
Date: May 23, 2002.

We are delighted to welcome Peter A. Selwyn, MD, MPH as our online guest for this issue of Innovations. Dr. Selwyn, the lead author of the Overview essay and the Featured Innovation in this issue of the journal, will be available to respond to your questions and comments through this web board over the next couple of weeks. Dr. Selwyn directs the Palliative Care Service and HIV Palliative Care Program at Montefiore Medical Center, Bronx, New York. We hope readers take this opportunity to join Dr. Selwyn in a web board discussion of palliative care as part of the spectrum of care for AIDS patients.

Karen S. Heller, Ph.D.
Associate Editor
Innovations in End-of-Life Care

Subject: Re: Welcome to Dr. Peter A. Selwyn!
Topic: Palliative Care for People Living with HIV/AIDS
From: Peter Selwyn
Date: Monday, June 03, 2002.

Thank you Karen - I would be interested in hearing from other readers whether their experience in providing care to patients with advanced HIV disease has been similar to ours - Thanks again for your efforts to focus this issue on clinical aspects of AIDS and palliative care, which has not received much attention of late, either in the AIDS or palliative care literature.

Peter Selwyn, M.D., M.P.H.

Subject: Palliative Care for People Living with HIV/AIDS
Topic: Palliative Care for People Living with HIV/AIDS
From: Sandy Stacy
Date: Monday, June 03, 2002

I was so glad to see this issue. I work at an AIDS Hospice, and the much discussed 'cure' for AIDS it not evident in our daily census. Also the issues that are present with HIV as the terminal process are different in that they are younger, more dysfunctional, not the traditional family support, history of poor judgment and coping skills, increased poverty, not to mention the moral judgment issue of risk factors. These patients present their own set of problems as well as rewards and I was glad to hear about it from others in the industry.

Sandy Stacy, DON, Omega House

Subject: Re: Palliative Care for People Living with HIV/AIDS
Topic: Palliative Care for People Living with HIV/AIDS
From: Peter Selwyn
Date: Monday, June 03, 2002.

Dear Sandy - I am curious how in your setting you have addressed some of the issues we discussed in the overview, such as how to incorporate anti-retroviral and other AIDS-specific therapy into palliative care, especially when there may be institutional or financial barriers to this. Has the nature of your patient population and clinical service also evolved with recent changes in the epidemic, longer-surviving patients, etc? Some designated 'AIDS hospices' (as you describe your facility) have closed, whereas others have evolved more into chronic care or skilled nursing-type facilities - ps

Subject: AIDS Hospice and how we have evolved
Topic: Palliative Care for People Living with HIV/AIDS
From: Sandy Stacy
Date: Wednesday, June 05, 2002.

Dear Peter, We are the oldest, HIV specific Hospice in the State of Texas. We are approaching our 16 Anniv. We have evolved a great deal. How we are handling HAART therapy is that a patient can come into hospice and continue to take it, but we will not initiate treatment even if a patient is naive to trmt. We do look at the symptoms that the HAART therapy may be causing and try to education the patient, if they would 'feel' better without this treatment. ie. loss of appetite from large number of pills. We are lucky enough not to have to worry about the financial barrier, because we are not a Medicare/Medicaid approved program. Since we are not filing for 'hospice benefits' their isn't a conflict with payment for meds. The scope of our residents has change, with less symptoms from the original defining illness, but now having much higher number with brain involvement. Our barriers, as with all of the hospice industry, is getting the medical teams to release patients, to live out their final days out side of the acute medical setting. Our census for the last 3 years has remained at 90% full, much higher than previous years. ss

YOUR NEWS AND ANNOUNCEMENTS

Subject: MNRS adds New Research Section
Topic: Your news and announcements
From: Deborah Bruley
Date: Friday, May 31, 2002.

The Midwest Nursing Research Society has created a new research section at their annual conference this spring: End of Life and Palliative Care. The new research section is devoted to promoting and facilitating nursing research in the area of end of life and palliative care. Please contact the chair of this research section at for more information. We welcome new members and will add you to our listserve at your request.

ARCHIVED ISSUES:

Camden County Health Services Center, LTC opened an 11 bed palliative care unit in Southern New Jersey in the summer of 2000. The census on the unit is consistently high. However, one of the barriers to overcome is marketing the unit to the public as a whole. Educating the public that palliative "care" is a transition from curative to end-of-life care has been a challenge. Once the word terminal or palliative is introduced consumers often believe that "care" becomes minimized, not realizing that palliative care is a level of care all its own. Has anyone run into these same issues? Any marketing suggestions?

Thanks,
Marilyn, Assistant Administrator/Case Manager, CCHSC,LTC

Subject: Palliative Care in Southern New Jersey
Topic: Archived issues 2002
From: Pamela Parrish
Date: Sunday, June 16, 2002.

The barriers that you mentioned are common with both Palliative Care and Hospice. How we have addressed them with the Palliative Care project is by focusing on what care we do provided, rather than focusing on what we don't. It is also important that you have data to support positive outcomes from your care. We also made ourselves available for presentations and publications. You might be surprised at how many organizations, both local and national, are interested in presentations, even if only poster presentations.

Pamela Parrish

Subject: Palliative Care in Nursing Homes
Topic: Archived issues 2002
From: Pamela Parrish
Date: Sunday, June 16, 2002.

RM--During the Palliative Care project, we conducted a staff survey of end-of-life issues. The survey was conducted both before and after our interventions. The results have not yet been published, but will be part of the Robert Wood Johnson, Excellence in End-of-Life Care project results. In the meantime, Dr. Christina Puchalski of the George Washington University published a spirituality tool (called FICA--Faith or Beliefs/Importance or Influence/Community/Addressing Issues). (Dr. Joanne Lynn's book, "Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians" has this tool as well as other great resources.) I have found the tool helpful in dealing with "internal bias", and when staff struggles to understand patients' choices. At Genesis, we also have a very responsive Ethics Committee that has helped us through the most difficult situations.

Pamela Parrish, Regional Clinical Educator, Genesis Health Ventures

Subject: Dr. Puchalski's FICA published here
Topic: Archived issues 2002
From: Anna Romer
Date: Tuesday, June 18, 2002.

Just a reminder-- Dr. Christina Puchalski was the featured innovator in one of our most popular archived issues "Spirituality and End-of-Life Care" published in Innovations in November-December 1999, Vol. 1, No. 6. The FICA is available on this website on the Resources and Tools page of that issue or can be accessed directly from the Featured Innovation. It was also subsequently published in the Innovations section of the Journal of Palliative Medicine. Here is the cite for the print publication: Puchalski C. Spiritual assessment tool. Journal of Palliative Medicine. 2000;3(1):131.

Anna L. Romer, Managing Editor