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I just wrote about my patient (and friend) and the struggles of people with a rare disease. A new book, Sunita Puri’s “That Good Night: Life and Medicine in the Eleventh Hour,” reminded me how poorly the U.S. deals with palliative care—a specialty that focuses on symptom relief—let alone end of life decisions and hospice care. The two terms are different and commonly misunderstood. In her book, Dr. Puri, medical director of palliative medicine at the University of Southern California’s Keck Hospital and Norris Cancer Center, dispels misconceptions and encourage patients to seek out care to enable a better quality of life.
Palliative care is a subspecialty treating serious illnesses in patients and helping them and their families adjust to what often becomes a chronic illness which worsens. Patient can continue to get aggressive treatments like chemotherapy or dialysis while seeking comfort and symptom relief. Teams are multidisciplinary and include physicians, nurses, and social workers, and chaplains or counselors. Their goal is to help the patient and family make decisions as the illness progresses, and to focus on communicating what the patient “might want for themselves if they were to get sicker.”
In contrast, hospice care is provided near the end of life, when someone is expected to live less than six months. Unfortunately, hospice is often begun only days to weeks before death because of our culture’s unrealistic expectations. Again, the focus is on symptom relief, but aggressive therapies, like chemotherapy, are discontinued. The definition of “aggressive” is open to debate, and needs to be carefully defined by patients, families, and providers. Through many stories, Puri emphasizes the need for better communication—between patient and physician, and among family members.
The need for more palliative care
Increasingly, people in the U.S. appear to have progressively less realistic thinking about pain, suffering and death than previously. In 1900, Americans died at a younger age and more quickly—from accidents, childbirth, or infection. Now, life expectancy is 30 years more, and deaths are from organ failure (heart/lung/kidney/liver disease), cancer, or stroke, with 2-3 years of disability before death.
In my own decades of practice, I’ve seen a shift from patients and families wanting a “good death” to demanding that “everything” be done. This takes a huge toll on the patient, who might prefer the focus to be on quality of life rather than extending a pained existence. I often feel like we are torturing patients who have no likelihood of recovery, and that sickens me. The U.S. spends more on healthcare than any other country. Spending has grown from 16% of gross domestic product (GDP) in 2015 to 17.9% in 2017. In contrast, the U.S. spent only 9% of GDP on social services—“such as retirement and disability benefits, employment programs, and supportive housing”—and was the only country spending more on health than social services in a 2013 report. I applaud Puri’s raising the question of absurdities in our health care system, which supports heavy “investment when a patient has an advanced illness, but not always before then, when it might actually assist in preventing some of the untimely deaths” and suffering.
Further, despite our efforts to defy death, the U.S. only ranks in 9th place in a quality of death index, with factors including the strength and availability of palliative care, public education about the topic, and financial support for patients. In the U.S., there are not nearly enough specialists trained in this field and they are more likely to be found in urban areas. If you are in a rural area, you are likely out of luck.
There are also racial and ethnic differences in access to palliative care and in end of life care. Pain from sickle cell disease, which primarily affects African-Americans, is often undertreated, as is pain in Hispanic patients.
Puri, among others, emphasizes that training for all health practitioners in “basic advanced care planning and discussions about care goals,” in addition to symptom relief, is essential. We also need to include teaching about cultural differences in values and beliefs, and strategies to address these.
Pediatric Palliative Care - Rare Diseases
Particularly for young patients like those with progressive rare diseases or cancer, palliative care would be better if started earlier. The pediatric teams might include play or art therapy. Dr. Puri emphasizes that “palliative care teams can and should see patients at ANY stage of their disease process, not just at the very end of their lives." Yet such services aren’t always easy to obtain.
Another hurdle for families with children with rare diseases or cancer is that many people, including physicians, may discourage families from seeking palliative services, not understanding that difference between this and hospice, and the additional challenges of meeting a child’s changing developmental needs over time. Jessica Shriver, a parent of two children with rare diseases, ethicist, and advocate on the Massachusetts Advisory Committee for Palliative Care, emphasizes that the goal of palliative is to "provide support for patients living with their condition" and these services should be added at the time of diagnosis of an incurable disease.
I applaud Dr. Puri’s efforts to encourage palliative care early in the course of a disease. As a society, we likely would be better prioritizing quality of life rather than fighting the inevitability of death.This is particularly important for the rare disease community, as advances in medical care allow many of these patients, mostly born with genetic diseases, to live for decades.
That Good Night
Dr. Puri’s book resonated strongly with me. I could relate to many of her experiences as the daughter of immigrants. And even in my relatively brief stays in India, the difference in the cultural attitude towards towards death became striking. I witnessed a stoicism and acceptance there when patients received diagnoses of cancer or similar serious problems. There was a faith and spirituality that is very different from what I see here. And even I, a born and bred worrier, was generally calm, recognizing how little control we have over many things and the impermanence in our lives. This thread of spirituality is woven throughout Puri’s practice.
Puri shares intimate moments in her memoir, as we accompany her through her training and experiences dealing with painful subjects, arrogant physicians, family relationships, and personal struggles. She learns, “each of my patients offered a vivid lesson in accepting inexplicable circumstances and choosing to live the best they can.”
Puri’s memoir is a beautiful, lyrical narrative that provides great insight on living more fully.
