Archive for October, 2011

On Organ Donation and Patient Wishes

by Katie Macaluso, AAHPM Quarterly Managing Editor

If you’re a member of AAHPM, you should be spotting a copy of the fall issue of AAHPM Quarterly in your mailbox any day now (if it hasn’t arrived already). Pick up this issue to learn more about the 2012 Annual Assembly, certification deadlines, advocacy efforts, and where palliative care falls in the readmissions boom (a feature article by Larry Beresford).

One standout article in the fall issue is “A Lasting Gift: Organ Donation” by Lucille Marchand, MD BSN. In this Art of Caring column, Dr. Marchand discusses one patient’s struggle to plan for organ donation upon his death. The patient was diagnosed with end-stage amyotrophic lateral sclerosis (ALS) and hoped to find meaning in his early death through the gift of organ donation. As the patient and his hospice team worked to develop a plan that would allow for a comfortable death for him and the successful harvesting of organs, it became clear that too many risk factors might prevent organ donation from being a viable option for him. Read the full article here.

Helping patients achieve their final wishes is so important to all involved in the interdisciplinary team. Have you encountered a similar situation to this one? How was it resolved? Do you have advice for your colleagues in hospice and palliative medicine?

Another Way to Advocate for Patients

by Emily Muse, AAHPM Communities Manager

I am a planner. I create lists, diagrams, and spreadsheets for almost everything. I even use a planning rubric when packing for weekend trips. Obviously, I began my preparation for the 2011 AAHPM Washington DC “Capitol Hill Fly In” by researching my congressional representatives and senators. I wanted to learn as much as possible about the people I would be meeting and were “representing” me in D.C. A lot of this investigation was done just by entering my zip code in the AAHPM Legislative Action Center. (http://www.capwiz.com/aahpm/home/)

At a glance I was able to discover all the committees that my senators and my congressional representative served on. How they had voted on specific legislation and issues and I read and reread all the proposed legislation that would affect AAHPM members. It was wonderful. After accessing their office addresses I plotted out where they were all located within the map of Capitol Hill.

I was ready, or so I thought.

What I was not prepared for was the knowledge, dedication and tenacity of our AAHPM members. It did not surprise me, it wowed me. Not only had our members prepared for this visit, they had been advocating and championing Hospice and Palliative in ways I had never thought about. One member encourages staff to contact elected officials regularly about HPM issues. Another invited his representative to visit his program and learn firsthand what Palliative Medicine provides for constituents. All of our members had brought with them anecdotes of patients achieving successful pain and symptom management, making decisions about their care that made sense for themselves and their families and utilizing allocated resources appropriately due to team based care and excellent communication among providers. And what was even more impressive, Senators, Representatives and Staffers all listened. They asked questions and posed some opposition, but they were open to learn more. I hope some of those members who participated in this year’s DC Fly In will write about their individual experiences. I think all of the participants were amazing, even one who commented that this was “just another way we advocate for our patients”.

AAHPM Calls on Washington (and you should be in touch with your local folk!)

Thoughts on Local Sausage-making and DC:

I spent an evening walking from the Washington Monument to the U.S. Capitol Building last week. Although the classic reference about legislation is “sausage-making” and something you don’t want to watch, I found the area by the capital buildings an especially peaceful spot to stop and admire the view of the reflecting pools projecting the mirrored image of our illuminated Capitol after a busy couple of days in DC. Despite all of the negative coverage about modern politics, the fact is that those working in DC are amazing, intelligent people. I couldn’t help but to be inspired by the promise that is the United States.

The AAHPM Public Policy committee held its second DC fly- in last week which proved a great chance to see DC in action. I was especially impressed by AAHPM’s policy team and its lobbying colleagues who are working hard to help represent all of us in Hospice and Palliative Care.

Perhaps you are thinking, the budget is a mess, health care reform is too controversial, and nothing can come of a DC visit?

To be honest, so did I. But I was wrong. The connections made this trip matter.

Sausage making in the Sinclair Lewis era was a disgusting mess and high risk, and I suppose that is why it was an apt metaphor for policy-making. Well, today I know my sausage makers, Patchwork Farms. They farm near me and I get their wares at my grocery. I know them and trust that what they produce is Missouri locally-raised pork that is high quality and raised in such a manner that is safe for my community.

And this is what is needed of you. You need to know your legislative representative and senators. (You can find them and e-mail them directly via AAHPM’s Legislative Action Center.)

Ask to meet them in your home town. Meet their health care aides.

And what do you say?

  1. Tell them who you are
  2. Explain what Palliative Medicine is. (I told the story of a rural gentleman that didn’t quality for hospice, but needed a good symptom control plan to help him achieve his key goal of avoiding hospitalization, and as a result he was able to go fishing and be at home when death came)
  3. Offer to be a resource for them locally
  4. Ask for support for the Palliative Care and Hospice Education and Training Act (read more about PCHETA here)
  5. Let them know of the bills that AAHPM supports (see link to AAHPM policy committee here)
  6. Make plans to stay in contact

Shouldn’t you know who is writing the laws that will determine the future of Hospice and Palliative Medicine and let your relationship help guide those future laws?

But do stay on target. Make sure you review the AAHPM policy site before your meeting, and if you get a question that you can’t answer just say so and promise to get back to them with an answer.