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Rewards at the Bedside


 

At our exciting and energizing annual meeting in Chicago, I had the honor and privilege of sharing my goals for SHM for the coming year: to promote palliative care and research in SHM and hospital medicine. Research will maintain SHM’s role as the leader in defining hospital medicine, and palliative care will keep us connected to our fundamental mission, which is to provide the highest-quality care to our patients. Over the next year I will share my vision for why I think these initiatives are key for SHM and our field and how SHM will promote them.

“...although they realized that Mrs. T. was dying of her disease, in their culture they believed that she would lose all hope if I told her how sick she was.”

Recently, family of Mrs. T., a 62-year-old woman with metastatic pancreatic cancer, asked me not to tell Mrs. T that she was dying of her disease. Mrs. T had been admitted with severe pain and nausea. She could not eat and had been losing weight. Her pain had gotten suddenly worse. We treated her pain and nausea aggressively and achieved good control of both. Before I saw Mrs. T, her husband and 2 daughters took me aside and told me that although they realized that she was dying of her disease, they feared that she would lose hope if I told her how sick she was. “Let her think that she can get chemo in the future,” they implored. I asked why. “So she will think she can get better,” they answered. I asked Mrs. T.’s family what they thought she thought was going on. “She knows she is sick but believes the chemo can make her better,” they said.

This was not the first time I had encountered such a request, but it always makes me uncomfortable. What if they are right? Couldn’t I hurt her by giving her bad news she doesn’t want to hear? But if they were wrong, wouldn’t I be denying her the opportunity to say good-bye and bring closure? I took the middle road. I promised the family I wouldn’t say anything the patient didn’t ask me to tell her, but I would offer her the opportunity to ask. My first question to her was a typical open-ended one: “How are things going for you?” Mrs. T. said, “Well my daughter spent the night with me in my room last night.” I nodded. “I think she did it because she thought I might die over night,” she said. Perhaps as I suspected, she understood more than her family thought. She worried about her husband and how he would do without her. She wanted chemotherapy but realized that the best it could do was prolong her life a few months. When I asked her what she hoped for, she told me she has hope in God. I explained that I had spoken with her family and told them what I had told her. I said that they were concerned about her and were afraid that this knowledge would be too much for her. We talked some more, and then she asked me to have her husband come to her. There were things they needed to talk about. Next she spoke with her daughters. All were grateful for the opportunity to talk openly about their grief, sadness, and love for each other. Mrs. T. died 2 days later.

I share this story because it reaffirmed for me the crucial role that I play as a hospitalist in the care of people with serious and terminal illness and the importance of palliative care in providing the highest quality of care to these people. Caring for Mrs. T. raised many issues: effective treatment of pain and nausea, discussion of prognosis, respect for cultural differences, exploration of spiritual issues, and a request from the family to withhold the truth. I felt like I was trying to delicately balance respecting the family’s wish while honoring my responsibility to the patient to tell her the truth. In the end, a careful conversation allowed me to bridge the gap and get Mrs. T. and her family talking. My conversation with her husband several days after she died reaffirmed the importance of raising these issues with Mrs. T.

As hospitalists, we encounter these situations regularly, maybe even daily. Half of Americans die in hospitals, and 98% of Medicare beneficiaries who die spend at least some time in a hospital in the year before death (School, 2000, #1006). We are the physicians who care for the seriously ill and the dying. The question is not whether we will take care of these patients; rather, when we do, will we be ready and able? A survey of hospitalists found that we recognize the importance of palliative care to our practice, but that we feel that our training did not adequately prepare us to provide this care (Plauth, 2001, #763). Our core curriculum, which you will see in early 2006 as a supplement to the 1st volume of the Journal of Hospital Medicine includes a chapter on palliative care.

In many ways palliative care is easy, and in many ways it is difficult. Yes, it takes time. Conversations like the ones with Mrs. T. cannot happen in 5 minutes. But an investment of time up front to talk with patients and their families about preferences for care can save many hours down the road. And yes, these discussions are challenging. It’s not just patients who don’t like to talk about death and dying, their families and physicians don’t like it either. But we can learn how to conduct these discussions better and can practice phrases that will help them go more smoothly. Pain and nausea can be difficult to control. Yet, palliative care experts report that pain can be relieved with simple medications like morphine in more than 95% of cases. As hospitalists, we can fulfill our sacred duty to the sickest patients by learning these critical palliative care skills.

SHM has provided learning about palliative care at most annual meetings and will continue to do so in the future. We will also work on providing many more educational materials targeted specifically at hospitalists. Many CME courses across the country focused on palliative care, including those sponsored by the American Academy of Hospice and Palliative Medicine (www.aahpm.org), which also offers many educational resources on its Web site. Many hospitalists have already participated in Education in Palliative and End-of-Life Care (EPEC) (epec.net), a comprehensive, well-regarded curriculum in palliative care that you can purchase on the web. There are textbooks in palliative care, including the Oxford Textbook of Palliative Medicine, 3rd edition, edited by Derek Doyle, Geoffrey Hanks, Nathan I. Cherny, and Kenneth Calman, and Palliative and Supportive Oncology, 2nd edition, edited by Ann Berger, Russell Portenoy and David Weissman.

With skills in palliative care, we can make a profound difference in the lives of our patients and their families. What is it worth to be able to say good-bye and “I love you” to your family? Mrs. T.’s husband was profoundly grateful for the opportunity to say those things and more to his wife before she died. And although his wife died in the hospital, he was exceedingly satisfied with the care she received. Relieving symptoms for seriously ill patients and talking with them about profound and important issues is not only good for patients; it is good for us, too. Providing high quality care to seriously and terminally ill patients can provide a deep sense of fulfillment and satisfaction through the real and intimate engagement with our fellow human beings. It also allows us to use our humanism and to connect directly to the reason that many of us chose medicine as a career— to help people. In this way it can also protect us against burnout.

I encourage every hospitalist to embrace palliative care for the benefits it will bestow on our patients and their families, for the benefits it will bestow on us, and for the benefits it will bestow on our entire field. As president of SHM, I will do all I can to help SHM promote palliative care, beginning with the newly appointed Palliative Care Task Force. Ultimately, palliative care is about demonstrating caring for our patients and our families. It reminds us that life is precious and that it is important to choose how we spend our time. This last lesson is, perhaps, the greatest gift of palliative care— learning to make the most of the time we have, embodied in this anonymous poem I received from a friend via email:

Sing like no one is listening.

Dance like no one is watching.

Work like you don’t need the money.

Love like you’ve never been hurt.

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