Eeven before the outbreak of Covid-19, there were legions of people with serious illnesses in America. Yet medical students and general practitioners receive only a few hours of education on how to help these people cope with suffering or plan for the end of their lives. Doctors are trained to prevent or treat disease and promote longevity, not to help people die.
That head in the sand approach has to change.
Every day, 40% of American adults deal with multiple chronic health conditions that cause unnecessary suffering, reduce their quality of life and increase their risk of death. At any given time, up to two-thirds of Medicare beneficiaries may be living with serious illness. This group represents only 5% of all health care expenditure, but accounts for almost half of all health care expenditure.
After working in palliative medicine and hospice medicine for three decades, I have learned that few people want to live longer if they can’t live better† Helping people live better lives often takes more than drugs. It requires team care that provides medical, emotional, spiritual and financial support to patients and their families to improve the quality of life they have left. It requires practitioners to understand what is precious and important to their patients if they are to help them achieve a sense of peace and purpose in the declining days of their lives.
Therefore, I believe that every clinician should understand and embrace the benefits of palliative care.
Hospice and palliative care are not the same. Hospice care requires a person to have a life expectancy of six months or less. Palliative care has no time limit. Any physician – primary care, oncologist, cardiologist or other specialist – can refer any patient to palliative care at any time if they are experiencing significant distress or could benefit from a discussion about care preparation.
I believe that palliative care should be provided to every individual with a serious illness as part of their routine care. A serious illness is a health condition associated with a high risk of death that either negatively affects a person’s daily functioning or quality of life, or puts pressure on the caregiver. In people with advanced lung cancer, early provision or provision of palliative care reduces symptom burden, halves depression and improves quality of life compared to standard care.
Take the case of a 40-year-old man with malignant melanoma who came to see me. The cancer had spread to his bones, lungs and brain. He was in a lot of pain, feeling extremely anxious and had lost a lot of weight due to nausea from cancer. The doctor who referred him to me thought that there was nothing more he could do curatively. There was an experimental treatment, but the patient couldn’t stand it.
I met the man, his wife and his parents and suggested a symptom management plan as well as a home nurse to administer it. I also suggested putting them in touch with a social worker to help with family relationship issues and a chaplain to help with spiritual anxiety. Palliative care is optimally delivered by an interdisciplinary team. Rarely can complex problems be solved by a single practitioner. On the contrary, a team’s collaboration can yield a more favorable outcome than any other team member.
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 in remission. He lived in relatively good health for several more years, during which time he and his wife witnessed the birth of their second child. Palliative care gave him a new lease of life.
My own experience of living with a prognosis of a few months has deepened my appreciation for palliative care. In January 2015, I was diagnosed with idiopathic pulmonary fibrosis, a scar in the lungs that makes it increasingly difficult to breathe. At the time, a lung transplant was out of the question, and as a clinician I suspected I had 18 months to live. I identified my end-of-life expectations and even selected a hospice room in my home. My family and I have planned my funeral. I returned to songwriting and revived a habit I had shut down over the years. This helped me manage the feelings and emotions associated with my illness and put the road ahead in perspective. Fortunately, I was able to receive a lung transplant in April 2017 and I had a wonderfully uncomplicated course of treatment after the transplant.
My work as a palliative doctor also determined my course. Both my breathing and coughing became significant symptomatic issues that interfered with my quality of life, and with the help of my palliative colleagues, we developed protocols for effective cough management that have helped me immensely. We are now incorporating those protocols into patient care plans and teaching them to others.
Knowing firsthand how this approach can improve patients’ lives as a patient and as a physician, my goal is to help all healthcare providers understand how it works and how it can support them in helping patients find peace of mind and enjoy the time they have left, whether it be weeks, months or years.
Palliative medicine specialists have a deep understanding of pain and symptom management treatments that have been developed over the years when seeing critically ill patients. Their teams have instant access to a wealth of emotional and spiritual resources to help initiate and support end-of-life plans. Palliative care can also facilitate the transition to hospice care for patients diagnosed with terminal illness. This network provides a support system for general practitioners and specialists of all kinds that can improve, not distract, the care they provide.
One of the goals of palliative medicine is to create the right environment and plan of care for each patient. In the past, referral to palliative care was not part of clinicians’ daily practice – it was simply not part of their practice. But as the field advances, advanced data and predictive analytics tools make it possible to identify patients in need of palliative care earlier, increase the number of palliative care consultations for critically 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 data sources and determine whether they are in or entering a stage of their illness that is expected to improve the quality of care. life and the need for more aggressive intervention and potentially high costs.
Holistic photos like these can help caregivers connect with a multidisciplinary healthcare community to collaborate and create 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 to live, providing vital support for what has historically been relegated to scientific guesswork.
I know from experience that palliative care is a win-win for both caregivers and patients. I look forward to the time when the entire medical establishment adopts palliation as an essential paradigm of care, making it a natural, normal, first-line treatment of choice for any person with advanced disease.
John Mulder is a palliative and hospice physician, medical director of palliative care at the University of Michigan Health-West, director of palliative medicine at Michigan State University College of Human Medicine, chief medical officer of hospice and palliative care at Holland Home, a member of the board board member for Acclivity Health and executive director for the Trillium Institute.