The Art of Medicine Near the End of Life

Thursday November 19, 2009: 
It never occurred to me until today that enrolling my patients in hospice could cause them harm and distress. What unfolded is what happens all the time but which I hadn't recognized could have such a negative effect. My patient had been receiving home health through one agency for chronic ulcers and short term home rehabilitation. She has been largely bed and chair-bound and I have seen her frequently on housecalls. Her condition had plateaued and with her strong desire not to ever return to the hospital and to live as comfortably as she could in her home until she died, we agreed it was time to transition to hospice. The previous home health agency did not have a 'sister'-hospice as part of their organization. So I enrolled her with one of the agencies I work closely with.

The intake by the hospice case manager was uneventful. All seemed well until I heard from her family that yesterday several men from several different DME (durable medical equipment) companies came in and out of her home to change ALL of her equipment: hospital bed, pressure pad, wheelchair, shower bench, oxygen and humidifier, etc. She was overwhelmed, distraught and felt she had lost all control of her life and her home. Hearing this I felt immense remorse and guilt. I already knew that many agencies have contracts with different DME companies. But I had never recognized that, of course, when hospice uses different companies from pre-hospice days, the equipment is changed over--necessitating a tremendous upheaval (physically and emotionally) for the client.

I wish I'd had the foresight to discuss the DME issues with the hospice case manager before this had occurred. Might we have been able to spread the visits so they didn't coalesce in a torrential downpour in one day? Or would there still have been an urgency by the DME companies and hospice to have everything set up promptly per their contracts? I don't know. I intend to discuss the case with the hospice. While patients in closed systems such as the VA or HMOs may not experience this, it's worth discussing for those of us who practice in the community and partner with different home health and hospice agencies. Who would have thought that something as 'mundane' as DME contracts could so significantly influence a patient's quality of life? Well, now I know better.
 

Posted by Helen Kao
 

Who can pass up the chance to give $50K to their favorite palliative care leader or organization if it turns out that it won't cost you a dime?  The Regence Foundation has established a new program, the Sojourns Award, aimed to promote palliative and end-of-life care in Idaho, Oregon, Utah, and Washington. It is meant to recognize individuals or non-profits that provide exemplary leadership and innovation in palliative care. One winner from each state will receive the Sojourns Award along with $50,000 (keep in mind before you go out and buy that new flat screen TV that individual awardees will need to give the money to a non-profit.)

The call for nominations is now out at the Regence Foundation website with a deadline of December 4th, 2009.  Anyone can nominate, however I would also be happy to put together a nomination for someone we think is deserving of $50K. Just comment on this post or email me with suggestions of people or non-profit organizations that inspire you.

November 10, 2009:  Hospices across the country care for terminally ill veterans during the final weeks and months of their lives. In honor of Veterans Day, we want to share the story of Cpl. Adam Austin and Staff Sgt. Deuntae Preston, both members of the United States Marine Corps. They serve as volunteers through a unique partnership with Heartland Home Health and Hospice in Kansas City. Stacy Higgins, Volunteer Coordinator at Heartland, matches Marines in the Single Marine Program with veterans in hospice care. HFA featured Cpl. Austin, Staff Sgt. Preston and Ms. Higgins on our Diversity and End-of-Life Care teleconference. (Read the full interview below the video.)

Link to Video:  Veterans Hospice Program

Tell us about your work with the Single Marine Program and Heartland Hospice.

AUSTIN:

A big facet of the Single Marine Program is volunteer work. And the hospice just seemed like a very great idea, to deal with veterans. As military members we are people that can actually give something back a lot more to these veterans. Because, these veterans don't talk a lot with their families. A big thing that this program has accomplished so far is actually looking at Marines as more than just a fighting force. We are compassionate people and we are actually able to give back to the community.

What motivated you to become involved in the volunteer program with Heartland Hospice?

PRESTON:

I would say what motivated me more or less was my background with the military. My grandfather was in the army. My uncle was in the navy. And I said it could me one day -- it could be a young corporal when I'm ill and they come out to visit me and it's just the right thing to do.

You know these are not only Marines, but Army, you know, sailors who laid their life on the line and just did the right thing from different wars back in the day and it was just the right thing to do.

AUSTIN:

My family is not very military oriented. I'm actually the first. But I always loved hearing stories. I loved to know any type of history about anybody. And this is the perfect way for me to actually get to sit down with people and hear so many things that happened back in their time. I love volunteering and this is a perfect opportunity for me.

What have been some of your most meaningful experiences volunteering with fellow veterans?

AUSTIN:

I have not found one that really didn’t want to share anything. They've been more than welcoming -- the whole family has been more than welcoming, the veterans and their spouses. I love the stories, the fact that there's still such camaraderie between military services, whether it was Marines, Air Force, Navy, Army. Like that fact when we are on the battlefield -- all that matters is that you all are brothers in a way. I love that.

My most meaningful experience was with one of our veterans -- he was a music lover and just me sitting down and playing the piano just meant the world to him, because that's something he couldn't necessarily do himself anymore. Just to give something as small as that, just to really move him; it got to me, it got to my heart.

PRESTON:

My most meaningful experience was with a veteran who didn't really want us to come in the beginning but changed his mind. And we get there and the conversation was wonderful. He was upbeat. He had a lot to talk about and he didn't want us to leave. And it just left me with a smile on my face knowing that in the beginning he didn't want us to be there. We came, we had a nice conversation, enjoyed his company and it just meant a lot to me and I saw that it meant a lot to him as a veteran.

What have been some of the more difficult experiences for you?

AUSTIN:

Some veterans, you know, they’ve had to go through a lot and they don't want to deal with a lot of it anymore.

I remember one; he actually just grabbed right a hold of me and said I just don't want to have to deal with this anymore. I don't want to -- I really don't want to necessarily deal with life. And I told him, “Well, you know, you're still here for a reason. I think you're still here for a reason, sir.”

PRESTON:

I would say it's difficult and it's easy. It's difficult in that you don't know what you're getting into. It's easy in the mind set where when you get there, you're learning from veterans, their different experiences, their background. So, you know, it's difficult and easy at the same time.

What about being a Marine has helped you to work with fellow veterans facing the end of life?

PRESTON:

I would say mainly as a Marine, we have to know -- you know, to deal with any type of death and dying; and just being able to cope with stuff like that, it does make it a little easier to be able to talk with the veterans.

AUSTIN:

What I take from this program is hope, hope that when I am much older and I'm a veteran -- that a program like this will still be around, in which I can share my stories.

I think the biggest thing with this partnership is really getting to give back to these veterans that have already done so much, for how they've already served their country.

And the fact that we can at least show them that yes, you are here, you're still part of that brotherhood. You still mean so much to us as present day military.