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In practice

Message from a dying patient

Dan Page for The Boston Globe

My patient, Janis, is dying. She does not mind me telling you this. In fact, she wants you to know. She also wants you to know what you can do to help yourself when your turn comes. Because it will.

Janis and I were born a few months apart and we have kids about the same ages. We’re both in health care — she’s a nurse. For several years our annual visits consisted of a quick update of her few medical problems, a routine exam, and a chat about raising children, juggling work and family, and finding time to exercise (an avid runner, Janis seemed, unlike me, to have figured this one out).

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Then, in 2010, our paths diverged when Janis was diagnosed with an aggressive form of ovarian cancer. “Everyone who is born holds dual citizenship,” writes Susan Sontag, “in the kingdom of the well and in the kingdom of the sick.” Janis moved to this other kingdom, the land of oncologists and chemo and head scarves and thinking, a lot, about what most of us try to avoid thinking about: death.

The kingdom of the sick is a hard place to be, but Janis is about as well-equipped for it as anyone you’ll ever meet. She’s physically tough — during chemo she kept working, fueled by naps in her car in the hospital lot — and mentally strong or, by her own description, stubborn. She’s got a team of top specialists. She has a supportive husband and two wonderful sons in their 20s, already launched in their careers. Janis also has deep religious faith, and finds comfort in knowing that she will go to heaven and be reunited there with loved ones.

But even with all these assets, Janis needed help — a particular kind of help she wished she’d gotten sooner and which she’d like you to know about in case you or a family member become seriously ill: palliative care.

Last spring, Janis’s new oncologist, Dr. Richard Penson, referred her to Dr. Vicki Jackson, the chief of Palliative Care at Mass General. The referral freaked out Janis a little. Was Dr. Penson trying to tell her that he didn’t think the treatment she was about to start would be successful? But Janis had read an article about palliative care and a relative had had a positive experience with it, so she agreed.

After meeting with Jackson, whom Janis calls Vicki, Janis realized that, contrary to common belief, palliative care is not synonymous with giving up hope. Nor does it represent an abandonment of patients by the physicians treating them. “I didn’t feel abandoned at all,” Janis says about Dr. Penson’s referral. “I felt more cared for.”

Palliative care is comprehensive, interdisciplinary treatment of the physical and emotional suffering of people who are seriously ill. Sometimes confused with hospice, palliative care is not exclusively for people at the end of their lives. Nor is it only for people with cancer. The specialty was conceived by Dame Cicely Saunders, a British nurse, social worker, and physician. Saunders began her work in hospice, but branched out to address what she called the “total pain” of patients: physical, psychological, social, and spiritual. Palliative care has been shown to improve the quality of and even prolong the lives of the very ill.

At first, Janis met with Vicki about once a month. They focused on controlling Janis’s abdominal pain. But Vicki also started asking Janis hard questions: how it felt to be ill, to be facing death. These questions didn’t shock Janis. She told me that she knew from the time of her diagnosis that cancer would shorten her life. That knowledge didn’t keep her from pursuing treatment or from hoping that the treatment would work. Janis appreciated that Vicki understood these seemingly conflicting thoughts.

As the months went by, and Janis’s cancer progressed, she met with Vicki more frequently. Their sessions were sort of like psychotherapy, Janis told me, but included a more strategic element. For example, Vicki helped Janis decide when to begin planning her funeral (sooner rather than later). Janis also felt comfortable talking with Vicki about what her final moments would be like. As a nurse, Janis had witnessed deathbed vigils and the final breaths known as “the death rattle.” An independent person who dislikes burdening others, Janis hates the idea of exposing her family to such a scene. Vicki has assured her it can be avoided.

In retrospect, Janis realizes she would have benefited from this kind of coaching years ago. Once, when she was in remission, a family member was dying of cancer. Janis was well, and, since she’s a nurse, it would have been natural for her to step in and provide care. But she didn’t feel up to it — not so much physically, but emotionally. She was in a brief respite from “Cancerland,” she told me, and she wanted to enjoy it. But she felt guilty, and someone like Vicki would have been very helpful sorting through all that.

I visit Janis in hospice and she is alert and animated. She laughs, she cries, she has a lot to say. She seems, in many ways, not so different than the healthy and vibrant woman I used to see once a year. She seems like Janis. I tell her I cannot imagine myself, in her position, being so brave. She tells me she wouldn’t be, if not for palliative care.

If she’d never met Vicki, Janis says, “I think I’d be in the fetal position, in this bed. But I’m still up, I’m walking around, I’m coherent. There’s just something that’s driving me. Part of it is who I am, but another part of it is the skills that Vicki has provided me with.”

I ask Janis if I can do anything for her and, to my surprise, she says yes. She asks me to write a column telling people that palliative care can be extraordinarily helpful. She asks me to remind doctors to refer patients early, at diagnosis.

Janis wants us to know that it’s possible, until the very end of our lives, to live.

Dr. Suzanne Koven is a primary care internist at Massachusetts General Hospital. Read her blog on Boston.com/
Health. She can be reached at inpracticemd@gmail.com.
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