Even the healthiest senior may eventually face serious illness and, of course, death. Seniors know this, and so do their family members and other loved ones. Despite this certainty, we are seldom prepared for late-stage and end-of-life illnesses. And we are even less comfortable talking about them.
Done right, palliative care is an enormous game-changer. It brings openness and fresh air to these topics. It can deliver a range of medical, psychological, social-support, and even spiritual services to patients and family members. It can provide all these resources without costing more money and, in some cases, can even save money by helping people receive care in their homes and not in more costly hospitals. Ideally, it should be available for a broad range of serious but not necessarily life-threatening health conditions.
Most importantly, palliative care and hospice, for those who are near the end of life, have been proven to extend lives and improve the quality of the time remaining for patients and their families. Further, we know what works and how to provide this care. Odds are, however, you have never heard of palliative care or if you have, you aren't really sure what it means.
Jane de Lima Thomas was in that boat only 10 years ago. And she was a doctor, no less, in the process of becoming a geriatrician. Early in her career, she recalls, "I took care of a lot of patients who were in the final stages of their life. The care I was able to provide didn't feel good." Something was missing in terms of helping patients and families cope with the broad range of health, quality-of-life, communications, and other challenges.
"I didn't even know there was a field called palliative medicine," she says. "I didn't hear about it in medical school and it wasn't part of the medical-school curriculum." Thomas made it part of hers. She is now associate director of the Harvard Palliative Medicine Fellowship Program at the Dana-Farber Cancer Institute in Boston, and teaches palliative care at the Harvard Medical School.
Hospice is an important component of palliative care, but only part of what it does. "My job isn't just to help people facing the end of their lives," although she certainly does that, Thomas says. "I feel like my job is to help anybody who has a serious illness."
"I feel so passionately that this is something we can learn to do much better," she says, while admitting that discomfort—amongst doctors as well as consumers—poses barriers to expanding palliative care, as do culturally driven approaches to medicine and medical reimbursement rules that can discourage providing palliative-care services.
"I think in our society, we are inclined to think of issues of health as a battle and we fight for life," she says. "And when someone dies, it's often portrayed as somehow we've lost a battle."
Palliative care, by contrast, recognizes "what medicine can do for a patient and what is beyond the power of medicine to provide." It includes a team of professionals, not just a doctor. Thomas rattles off a list that includes a physician, nurse, social worker, pharmacist, chaplain, occupational therapist, musical therapist, and others.
Daniel Johnson is a palliative-care expert who wears multiple hats for Kaiser Permanente in Colorado. He also helps educate new doctors through the Life Quality Institute. Thomas and Johnson are two of five doctors recently honored for their work in palliative care by the Hastings Center, a nonprofit bioethics research institute.
Johnson's nontraditional route to medicine began with a college engineering degree and work as a geophysicist. He now says his science background was instrumental in helping him create a system of integrated palliative care to provide a range of services similar to those Thomas describes.
"Often, [the medical profession is] just treating people as if they had a clinical disease," he says. "We need to make sure that the care we're providing fundamentally starts with the recognition that we're honoring them as people."
"A prescription pad doesn't cut it," he adds. "People often need a team-based approach." This extra layer of support includes many of the skill sets Thomas lists. In Johnson's case, his work has also involved expanding team-based palliative care from a hospital setting to at-home and ambulatory care models.
Training doctors in palliative care is challenging in its own right, but begs the question of how to convert the public to a different way of approaching stressful and emotional topics. Journalist Ellen Goodman has spearheaded The Conversation Project to encourage and help families deal with difficult but unavoidable end-of-life issues. The American Academy of Hospice and Palliative Medicine supports a good consumer site explaining palliative care and advising consumers how to use it.
In gauging the value of palliative care, Thomas says she knows she's on the right track when she looks at care-assessment reports from patients and their families. Patients and families are often uncomfortable and reluctant to talk about their broader care needs. Once they've received care, however, their attitudes change. "Our patient and family satisfaction rates are through the roof," she notes. Given that so many of her patients die, such positive responses are all the more telling.