A doctor with terminal cancer is dependent on a close-knit group in his last days

The decisions have been stomach-churning. Should she try another round of chemotherapy, even though she barely tolerated the last one? Should she continue to eat even if it gets difficult? Should she take more painkillers even though she ends up being heavily anesthetized?

Dr. Susan Massad, 83, has made those choices with a group of close friends and family – a “health team” she created in 2014 after learning that her breast cancer had metastasized to her spine. Since then, doctors have also found cancer in her colon and pancreas.

Now that Massad is dying at home in New York City, the team is focused on how she will live through her final weeks. It is understood that this is a mutual concern, not hers alone. Or, as Massad told me, “Health is about more than the individual. It’s something people do together.”

Originally, five of Massad’s team members lived with her in a Greenwich Village rut she bought with friends in 1993. They are in their 60s or 70s and have known each other for a long time. Earlier this year, Massad’s two daughters and four other close friends joined the team as she considered another round of chemotherapy.

Massad ended up saying “no” to that option in September after weighing the team’s input and consulting with a doctor researching treatments on her behalf. Several weeks ago, she stopped eating – a decision she also made with the group. A hospice nurse visits weekly, and a helper comes five hours a day.

Anyone with a question or concern is free to bring it up with the team, which now meets “as needed.” The group does not only exist for Massad, explained Kate Henselmans, her partner, “it’s about our collective well-being.” And it’s not just about team members ’medical conditions; it is about “wellness” much more broadly defined.

Massad, a primary care physician, first embraced the concept of a “health team” in the mid-1980s when a university professor she knew was diagnosed with metastatic cancer. Massad was deeply involved in community organization in New York City, and this professor was part of those circles. The professor was a self-proclaimed loner and said she wanted deeper connections with other people in the last phase of her life.

Massad went along with the woman’s social therapist and two of her close friends to provide help. (Social therapy is a form of group therapy.) Over the next three years, they helped manage the woman’s physical and emotional symptoms, accompanied her to doctor visits, and mobilized friends to make sure she was rarely alone.

As the news of this “let’s do this together” model came out, dozens of Massad’s friends and colleagues formed health teams that lasted from a few months to a few years. Each is unique, but they all revolve around the belief that illness is a shared experience and that significant emotional growth remains possible for all involved.

“Most health care teams have been organized around people who have quite serious illness, and their overall goal is to help people live the most fulfilling life, the most rewarding life, the most social life they can, given that reality,” Massad told me. An emphasis on collaborative decision making sets them apart from support groups.

Emilie Knoerzer, 68, who lives next to Massad and Henselmans and is a member of the health team, gives an example from a few years ago. She and her partner, Sandy Friedman, often fought, and “it was bad for the health of the whole house,” she told me. “So the whole house brought us together and said, ‘This is not going well, let’s help you work on this. And if we started going into something, we would go and ask someone for help. And it’s much better for us now. “

Mary Fridley, 67, a close friend of Massad and another health team member, gave another example. After experiencing serious problems with her digestive system over the past year, she assembled a health care team to help her understand her experiences with the medical system. None of the many doctors Fridley consulted could tell her what was wrong and she felt a huge amount of stress as a result.

“My team asked me to keep records and keep track of what I ate and how I reacted. It was helpful,” Fridley told me. “We worked on not being so defensive and humiliated every time I went to the doctor. At one point I said, ‘All I want to do is cry,’ and we cried together for a long time. And that was it. not just me. Other people also shared what was happening to them. “

Dr. Hugh Polk, a psychiatrist who has known Massad for 40 years, calls her a “health pioneer” who practiced patient-centered care long before it became a buzzword. “She wanted to tell patients, ‘We want to work together as partners to create your health.’ I have expertise as a doctor, but I would like to hear from you. I want you to tell me how you feel, what your symptoms are, how your life is, “he said.

As Massad’s end approaches, the hardest but most satisfying part of her teamwork is “sharing emotionally what I’m going through and allowing other people to share with me. And asking for help. It’s not things that come easily. ” she told me via phone call.

“It’s very challenging to see her die,” said her daughter Jessica Massad, 54. “I do not know how people do this on their own.”

Every day, a few people inside or outside her house stop by to read for Massad or listen to music with her – a schedule that her team monitors. “It’s a very intimate experience, and Susan feels loved so much,” Henselmans said.

For Massad, it is liberating to be surrounded by this kind of support. “I do not feel compelled to keep living just because my friends want me to,” she said. “We cry together, we feel sad together, and it can be hard. But I feel so well taken care of, not at all alone with what I go through.”

We are eager to hear from readers about questions you would like answered, issues you have had with your care and advice you need in dealing with the healthcare system. Visit khn.org/columnists to submit your requests or tips.

Kaiser Health NewsThis article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, an impartial health policy research organization unrelated to Kaiser Permanente.

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