As a doctor specializing in care for the elderly, I’ve often seen the difference it makes when patients, their families, and their health care providers talk openly about the inevitable: death and the care that may occur as people enter the later stages of life.
Your own family may have experienced it: With support from doctors, nurses, social workers, and others who understand the journey of terminal illness, patients can plan for the care they want and need. But without such support, patients may feel caught in a system that’s out of control, providing too much or not enough of the right kind of care—causing harm and worsening families’ mourning.
Also, as a health services researcher, I know the toll society pays when we fail to help patients talk about and plan for eventualities like end-of-life care. Surveys show most Americans would prefer to die peacefully at home—and a recent study shows increasingly more are doing so. But the same study also reports that in their last three months, more patients are being hospitalized—and more often in intensive care units. Sadly, most American’s don’t use hospice care, and even when used, it is often postponed until just a few days before death—“too little, too late” for patients to benefit fully. The financial burden of so much hospitalization is enormous: More than one in four Medicare dollars cover the last year of patients’ lives, and four in five Medicare dollars for their last month of life go toward hospital care.
Why, despite our best intentions, is well-planned end-of-life care often out of reach? Some might say it’s human nature. We’re so wired to take action in the face of crisis and suffering that we tend to overdiagnose and overtreat. Others say the system is too fragmented, and patient-doctor relationships too impersonal or rushed, so conversations about end-of-life care planning don’t happen. Patients seek and get treated for their most acute problems, but too little attention is paid to the whole person and their unique circumstances: their stage of life and illness, their level of frailty, their preferences, values, and religious views. The default—especially in health care systems that incentivize high-tech treatments and procedures—is to do as much as possible, whether or not the patient needs or wants such care.
There is, of course, an alternative. Well-designed palliative care programs can improve care for patients with such life-threatening conditions as many cancers and incurable heart disease. Palliative care focuses on managing patients’ symptoms, treating pain, and easing stress. Patients get clear information about their prognoses and participate in decisions about their care. Such care recognizes the diversity of patients’ attitudes and beliefs about death, ranging from a desire for every possible intervention to requests for assistance in making death come sooner.
Research shows that palliative approaches serve patients well. A 2010 New England Journal of Medicine study found that lung cancer patients who got palliative care had better quality of life and lower costs—and longer survival—than did those receiving standard care for the disease. The Wall Street Journal reports many insurers are establishing palliative care because they find this extra layer of support results in higher patient satisfaction and lower costs.
Group Health has expanded its palliative and hospice care programs in recent years. It also launched a new program to train physicians to communicate with patients and families about end-of-life care. With support from a Partnership for Innovation grant, it is distributing shared-decision making videos to help patients make choices about advance care planning. Group Health patients can also attend the free in-person Your Life, Your Choices class on end-of-life planning, including advance directives.
But more can still be done to ensure that every Group Health patient facing serious illness receives care aligned with their wishes and values—not more, not less. Group Health Research Institute Assistant Investigator and oncologist Elizabeth Loggers, MD, PhD, is working with Group Health Assistant Medical Director of Primary Care Annie Chun, MD, and others to design and evaluate a standard process for introducing and conducting advance care planning conversations into the patient-centered medical home, including using electronic medical records to identify patients who may benefit. Patients and their families will receive advance-planning decision aids before a clinic appointment specially scheduled to discuss preferences for care. The ideal is to fold this process into established patient-doctor relationships, where comfort and trust already hold sway.
We hope this project spurs further studies into improving care for patients with late-stage illness and those nearing life’s end. It only makes sense that Group Health—with its record of innovation in patient-centered care—would keep the conversation going: for the good of our patients, their families, their health care teams, and our communities.
--Eric B. Larson, MD, MPH
Vice President for Research, Group Health
Executive Director, Group Health Research Institute