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Wednesday Jun 12, 2013

Hospice Experience Can be Rewarding

It used to be that when I had a patient whose health was declining and he or she was nearing the end of life, I would direct the patient to hospice care.

Hospice would take responsibility for the patient's care, and I would receive updates by phone. I might go by and see the patient once or twice. Ultimately, I would be notified that the patient had died, and I would call the family to offer my condolences.

That was my standard procedure for more than 20 years.

Life goes on.

Then my own mother was diagnosed with cancer. Her health declined, and she went to hospice. There, I was free to be her son and not another doctor in the room. We listened to the old 1950s music that she loved and reminisced. I will always be grateful that we had those 21 days together.

My mother's physician at the hospice was a general internist who had his own practice but who also worked at the hospice on the side. I was intrigued, and, rather than following the old routine of referring my terminal patients to someone else, I started following them through hospice care myself.

It only makes sense. Family physicians help bring new lives into the world. Then we care for those patients throughout their lives and help them make that life as healthy and productive as possible. At the end of life, we can help them be as comfortable as possible.

The hospice in San Antonio is near the hospital to which I refer my patients, so I make rounds at both facilities. I was at hospice often enough checking on my own patients that, after a few years, I was asked if I would take calls a few times a month. So now I work two weekdays and one weekend a month at hospice in addition to my own practice. And after I take on a hospice patient, I follow him or her through the process.

Hospice can be an uncomfortable topic for physicians, but I've found it incredibly rewarding. The opportunity to build relationships with patients is why many of us chose family medicine in the first place. We build connections over years with our patients. In hospice care, similar bonds can form in a much shorter time.

One of the patients I met at hospice was a 42-year-old single mother. She had terminal throat cancer and could no longer talk. During rounds one day, I asked if she had any pain. She did not look up from her notepad and simply wrote, "No." I asked if I could do anything for her. Again, she wrote, "No."

So I went on and completed my rounds. But when I was done, I went back to her room and sat down by her bed. She wrote that she did not want to talk, but I told her that we should talk anyway.

Then I asked her what she was afraid of.

I looked down at her notepad waiting for a response, but what I saw next were not words but tears dropping on the page.

She was afraid that the cancer would eventually erode a major artery in her throat, and she would drown in her own blood. I assured her that if her condition deteriorated to that point, we would give her medication to make her sleep, and she would not suffer. She asked me to promise, which I did.

She then told me about her adult daughter and her 6-year-old son and that she wanted the daughter to have custody of the boy. The paperwork had not been completed, so I arranged for a social worker to meet with them, and it got done.

At one point, she took my arm and told me, in writing, that two oncologists, two surgeons, an otolaryngologist and two radiologists had seen her during her treatment, but I was the first doctor who had sat down and talked with her.

Well, that's what family physicians do, isn't it?

In 72 hours, she was gone. But after those three days, it seemed like I had known her for years.

That's what the hospice experience can be.

If you think you don't have anything to offer to hospice care, you might be wrong.

Lloyd Van Winkle, M.D.is a member of the AAFP Board of Directors.


I, too, am a family practitioner also certified in hospice care. My practice is my bread and butter, but my hospice work feeds my soul. It keeps me going when the daily hassles of paperwork and insurance companies and difficult families (its always the family that is the problem, never the patient, it seems) get me down. The only thing I would add to this article is that too few patients get referred to hospice care. So many without cancer diagnoses would benefit from all of the support and comfort hospice can provide. Please consider referrals for your patients with any end-stage disease, such as COPD, CAD, liver disease, etc.

Posted by bhodgesmd on June 13, 2013 at 06:58 AM CDT #

This article exemplifies why we all as primary care docs should be involved in the end of life care of our patients when they need it. Like Diabetes where we do not refer any but the most difficult of our patients to endocrinology, so it should be with end of life care. To get there the palliative physicians (I am one as well as an FP) need to educate and empower our less confident colleages, and we need to embed this care in the training of new FPs. However, one of the most important facts to remember is that what patients need most at the end of life is presence, not knowledge, and knowing that they are not being abandoned as they face this scary and unpredictable journey. As the writer and previous commentator have stated, being part of this process is the real reward of this kind of work.

Posted by David Ross Russell on June 13, 2013 at 08:01 AM CDT #

I have been involved in hospice movement part-time for 30 years and it is indeed my soul work and escape from all that takes me away from patient care. It is the one place where I am truly in a team with the main goal of compassionate, holistic patient care. Unfortunately, we who do this part-time outside our offices will again be faced with more required exams and courses that involve travel and time away in order to keep doing what we love. The powers that be are favoring large hospices with full-time docs and organizations that will use this opportunity to make money in the name of "quality".

Posted by seekermd on June 13, 2013 at 11:29 AM CDT #

Thank you for your insight into why we became family physicians in the first place. I have transitioned from cradle to grave family practice to full time hospice and palliative care (in a non-profit hospice, I agree with the above comments) and see it as a very natural progression. The need for compassionate end of life care will soon overwhelm our fragile medical system. FP residency programs need to have a required rotation in palliative care, and soon!

Posted by Jack L. Wright, M.D. on June 23, 2013 at 07:22 PM CDT #

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