Even before the onset of Covid-19, there were legions of people with serious illnesses in America. Yet medical students and resident physicians get only a few hours of education on how to help these people cope with suffering or plan for the ends of their lives. Physicians are trained to prevent or treat illness and promote longevity, not to help people die.
That head-in-the-sand approach needs to change.
Every day, 40% of American adults cope with multiple chronic health conditions that cause unnecessary suffering, diminish their quality of life, and increase their risk of dying. At any one time, up to two-thirds of Medicare beneficiaries may be living with serious illness. This group represents just 5% of all health care spenders, yet it accounts for almost half of all health care spending.
After three decades working in palliative and hospice medicine, I’ve learned that few people want to live longer if they can’t live better. Helping people live better often requires more than medicine. It requires team care that provides medical, emotional, spiritual, and financial support to patients and their families to improve the quality of the life they have left. It requires that practitioners understand what is precious and important to their patients if they want to help them achieve a sense of peace and meaningfulness in the waning days of their lives.
That’s why I believe that every clinician should understand and embrace the benefits of palliative care.
Hospice and palliative care are not the same thing. Hospice care requires that a person have a life expectancy of six months or less. Palliative care has no time limit. Any physician — primary care provider, oncologist, cardiologist, or other specialist — can refer any patient for palliative care at any time if they have a significant burden of suffering or could benefit from an advance-care planning conversation.
I believe that palliative care should be offered to every individual diagnosed with a serious illness as part of their routine care. A serious illness is a health condition associated with high risk of dying and either negatively impacts a person’s daily function or quality of life or strains their caregiver. Among people with advanced lung cancer, offering or providing palliative care early on lowers the symptom burden, reduces depression by half, and improves quality of life when compared to standard care.
Take the case of a 40-year old man with malignant melanoma who came to see me. The cancer had metastasized to his bones, lungs, and brain. He was in considerable pain, felt extremely anxious, and had lost a lot of weight from cancer-related nausea. The physician who referred him to me felt he could do nothing more from a curative standpoint. An experimental treatment existed, but the patient would not be able to withstand it.
I met with the man, his wife, and his parents, and suggested a symptom-management plan, as well as a home-care nurse to administer it. I also suggested connecting them with a social worker to help with family relationship issues and with a chaplain to help with spiritual anxiety. Palliative care is optimally delivered by an interdisciplinary team. Rarely can complex issues be remedied by a single practitioner. Rather, the collaboration of a team can produce a more favorable outcome than any one team member can.
As a result of pain relief and support, the man’s physical and emotional health improved. He became strong enough to handle the experimental treatment, which put him into remission. He lived for several more years in relatively good health, during which his wife and he experienced the birth of their second child. Palliative care gave him a new lease on life.
My own experience facing a few-months-to-live prognosis deepened my appreciation for palliative care. In January 2015, I was diagnosed with idiopathic pulmonary fibrosis, a scarring of the lungs that makes it increasingly difficult to breathe. At the time, a lung transplant was not in the cards, and my guess as a clinician was that I had 18 months to live. I identified my end-of-life expectations, and even picked out a hospice room at my house. My family and I planned my funeral. I returned to songwriting again, resurrecting a habit I had mothballed over the years. This helped me manage the feelings and emotions related to my illness, and put the path ahead in perspective. Fortunately, I was able to get a lung transplant in April 2017, and have had a delightfully uncomplicated post-transplant course.
My work as a palliative physician also informed my course. Both my breathing and coughing jags became significant symptomatic issues interfering with my quality of life, and with the help of my palliative colleagues, we developed protocols for effective cough management that helped me significantly along the way. We are now incorporating those protocols into patient care plans and teaching them to others.
Knowing firsthand as a patient and as a physician how this approach can improve patients’ lives, my goal is to help all providers understand how it works and how it can support them in helping patients find peace and enjoy the time they have left, whether it’s weeks, months, or years.
Palliative medicine specialists have a deep knowledge of pain and symptom management treatments developed over years of seeing seriously ill patients. Their teams have ready access to a wealth of emotional and spiritual resources to help initiate and support end-of-life plans. For patients diagnosed with terminal illnesses, palliative care can also ease the transition to hospice care. This network provides a support system for primary care physicians and specialists of all types that can enhance the care they provide, not detract from it.
One of the goals of palliative medicine is to create the right environment and care plan for each patient. In the past, referral to palliative care was not part of the routine practice of practitioners — it simply wasn’t part of their practice habit. But as the field moves forward, sophisticated data and predictive analytics tools make it possible to earlier identify patients who need palliative care services, increase palliative care consultations for seriously ill patients, and improve their quality of care. Technology can be used to aggregate a patient’s complete medical, social, and emotional profile using multiple sources of data and identify whether she or he is in — or is entering — a phase of their disease that is expected to affect quality of life and impose the need for more aggressive intervention and potentially high cost.
Holistic pictures like these can help providers connect with a multidisciplinary care community to collaborate and devise — and act on — an appropriate care plan. Machine learning and artificial intelligence can also help determine with incredible accuracy at what point a patient has months left to live, providing vital support for what historically has been relegated to educated guessing.
I know through experience that palliative care is a win-win for providers and patients alike. I look forward to the time when the entire medical establishment adopts palliation as an essential paradigm of care, making it a natural, normal, upfront, and preferred treatment of every person with advanced disease.
John Mulder is a palliative and hospice medicine physician, medical director for palliative care at the University of Michigan Health-West, director of palliative medicine for the Michigan State University College of Human Medicine, chief medical consultant for hospice and palliative care at Holland Home, a member of the board of directors for Acclivity Health, and executive director for the Trillium Institute.
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