By Eric B. Larson, MD, MPH, Kaiser Permanente Washington Health Research Institute executive director, and Kaiser Permanente Washington vice president for research and health care innovation
As a primary care physician and researcher specializing in aging, I’ve often heard people describe their ideal death. They say things like:
“I want to be at home, free of pain.
“I don’t want to be in a hospital connected to tubes and wires.”
“I imagine it will be peaceful. I’ll just go to sleep and not wake up.”
“I certainly don’t want to linger.”
And who is most likely to experience this kind of “good death?” Anecdotally, I’ve noticed it’s often the parent of a doctor. As unfair as it sounds, that’s because doctors understand what it takes to get the kind of care their parents want late in life. They know what can happen if the family is not proactive; if they don’t have a solid plan for care in today’s high-tech, life-extending health care systems; if they don’t step in and say “no” to care that’s unnecessary and unwanted.
But such understanding should not be limited to so few. Imagine instead a world where everybody has an equal chance to have the kind of death that suits their own values. What would that look like and how would we talk about it?
It’s a question that Dilip V. Jeste, MD, director of the Stein Institute for Research on Aging at the University of California San Diego School of Medicine, has considered extensively. He and his team published a study in 2016 that reviewed previous research on what constitutes “successful dying”—according to people who are dying, their relatives, and health care providers. The team’s goal was to help identify unmet needs and find ways to make care more individualized. Their work uncovered these themes:
• Determining patients’ preferences for the dying process (how death will occur, who will be there, where, and when; dying in sleep; and making preparations such as advance directives and funeral arrangements)
• Pain-free status (not suffering; having pain and symptom management)
• Emotional well-being (getting emotional support; psychological comfort; having a chance to discuss the meaning of death)
• Family (family having support, accepting of death, prepared for death; not being a burden to the family)
• Dignity (being respected as an individual and maintaining independence)
• Life completion (saying goodbye, feeling that life was well lived, and accepting impending death)
• Religiosity/spirituality (religious or spiritual comfort; faith; meeting with clergy)
• Treatment preferences (not prolonging life, a belief that all available treatments were used; control of treatment; accessing euthanasia/physician-assisted death)
• Quality of life (living life as usual; maintaining hope, pleasure, gratitude; feeling life is worth living)
• Relationship with health care provider (having trust in and gaining support and comfort from physicians and nurses; having a physician who is comfortable with death and dying; being able to discuss spiritual beliefs or fears with a physician)
• Other (recognition of culture; experiencing physical touch; being with pets; considering health care costs)
Here at Kaiser Permanente Washington Health Research Institute (KPWHRI), we’re working with our partners in the Kaiser Permanente Washington care delivery system to improve care late in life so that more people can have the kind of death Dr. Dilip’s team describes. Our aim is to allow more people to die quietly and comfortably at home, honoring their needs and preferences, ensuring that they get the right care at the right time, but avoiding care that’s not wanted or needed.
One step is to begin implementation of Kaiser Permanente’s Life Care Planning program in our region, which will help patients facilitate discussions around their prognosis and goals of care. Too often in our society, people avoid such conversations until they’re in a health crisis and there’s no time for patients, family members, and caregivers to talk about these matters. The Life Care Planning Program, in contrast, is designed to encourage such conversations before a crisis happens so that patients can clarify their wishes and identify someone who can speak for them if they cannot speak for themselves. Once implemented, we anticipate that this program may improve systems used to document patients’ preferences and make them more transparent to all caregivers. Ideally, the program will be available for all vulnerable older adults, including those who live in adult family homes and care facilities.
We’re also working together to develop better support for helping patients carry out their care plans. One example: promoting palliative and home-based medical care so patients can avoid unnecessary and unwanted trips to emergency units and hospital stays.
A recent pilot project of home-based palliative care for patients with advanced dementia who are not in hospice care showed the merits of such an approach. Led by Kaiser Permanente Washington physician Barbara Walker, MD, and evaluated by KPWHRI medical anthropologist Marlaine Figueroa Gray, PhD, the team worked closely with caregivers and adult family home owners to anticipate likely disease courses and put proactive plans in place to manage crises before they arose. For example, they had conversations—before illnesses such as urinary tract infections and pneumonia arose—about difficult decisions like whether to use antibiotics or to simply do home-based comfort care. They counseled adult family home owners to call 911 in a medical crisis as mandated by law, and to also call the patient’s caregiver, who was empowered to refuse transfer to a hospital. At the end of the pilot, the team found that their study population of 30 patients had no hospitalizations or emergency visits, compared to a high volume of such visits among a similar group of patients. Meanwhile, the patients in the pilot program received routine care and symptom management at home. All of the caregivers and family members of these patients reported increased satisfaction with care and relief that they were getting care appropriate to their loved ones needs
Changing the culture of entire health care systems to provide better late-in-life care is a big job that requires significant investment. Doing it well calls for additional training to help clinical teams support patient preferences. We also need to bolster supportive technology. Examples include providing webcams for in-home care and implementing advance-care planning modules in the electronic health record systems providers use.
Such changes can be costly, but there’s good reason to believe that such measures will reduce cost of care in the long run because people will experience less unnecessary and unwanted acute care in the last year or so of life. Most importantly, however, these improvements will allow us to provide the kind of humane, dignified, and patient-centered care that most people want late in life.