At the Crossroads

“Memory care” facilities in America are strange and unique phenomena. They have no true counterparts in most other advanced economies. Many other nations, for example, facilitate community-based dementia care in smaller cohorts. Some have even innovated through building dementia-focused communities, the best known of which is the Hogeweyk Dementia Village in the Netherlands. By contrast, in the United States, the concept of “memory care facilities” is strongly linked to the growth of assisted living. While some people living with dementia reside in long-term skilled nursing facilities (SNFs), such facilities are often a last resort for patients and families, as they nearly universally look and feel like hospitals. In most states, memory care units are embedded within assisted living facilities (ALFs), which are in turn regulated by state, rather than federal, entities.

Dying and the experience of death are deeply difficult yet universally human things, at any age. We spend considerable time figuring out how best to live and support our loved ones as they live, yet death and dying receive comparably scant attention. This is as true of doctors and healthcare providers as it is of patients. As critical care physician-turned palliative care specialist Jessica Nutik Zitter has written, nearly all of us tend to “take our leave” in conversations about dying. For doctors, “rather than confront our own discomfort… we move on to the next patient.” We avoid what we can, until we can’t.

Health systems and insurance schemes compound this avoidance. Health systems are so thoroughly built to try to fix things that the machinery of medicine approaches dying as failure. In common parlance, some version of “There is nothing else we can do” is often uttered. Health insurance doubles down on this black-and-white, fix-or-fail mentality. You are either on hospice, or you are not on hospice. In many administrative and financial models for healthcare insurance, the border between “curative” and “palliative” medicine is nearly impermeable. There is no gray.

The problem is that the universally difficult experience of death and dying is painted in many shades of gray. As a geriatrician serving many of the oldest of our elders, dying and sometimes death are near-daily encounters. As one mentor reminded me, “We have a 100% mortality rate” in geriatric medicine. For healthcare providers in palliative and primary care, the inevitability of dying means we must attend to the gray areas of life and death, journeying through them with patients and families. This means spending time asking and answering hard questions about who we are, what we want, and what kind of horizon we envision for ourselves in life’s twilight.

One of the hardest pills for us to swallow is the recognition that medicine’s tremendous capacity to fix can itself cause harm toward the end of life. I choose those words purposefully and not lightly: cause harm. It is not just that fix-it, curative medicine can become ineffective. For many, there are tipping points at which curative medicine no longer prevents decline and instead contributes to it. For those living with advanced illness, encounters in hospitals and emergency rooms often carry large trade-offs for our health, both physical and mental. In such settings, our ailment may be successfully treated, but we return home profoundly weakened both physically and cognitively. That weakening both dampens our quality of life and simultaneously puts us at high risk for returning to the hospital, again and again. This phenomenon is now so well-studied that researchers have a name for it: “the hospital-dependent patient.” Rather than stymie dying, we sometimes accelerate it through our interventions, rendering patients dependent on the most advanced technologies, found only in hospitals, in order to survive. And the nature of that survival—spending, for example, over half their remaining months of life in hospitals and nursing homes instead of in their homes and communities—may not align with their wishes for the end of their lives. This is why, paradoxically, hospice care can sometimes prolong life in addition to improving its quality.

It is often incredibly challenging for non-clinicians, and even sometimes clinicians, to discern whether or not someone has reached this tipping point. One quite revealing approach to this challenge has been to pose what is called the “surprise question.” Patients, families and clinicians alike can be asked, “Would you be surprised if this individual died within the next twelve months” (sometimes the duration is shortened to six months)? Our predictions aren’t perfect – there is, for example, more margin of error for those who answer “no, I would not be surprised” than for those answering “yes, I would be surprised”—but it may be a helpful starting point in the midst of uncertainty.

When is it appropriate to enroll in hospice? The short answer is: as soon as you and your healthcare providers think that hospice care might align with your own goals of care and when an assessment of the relative benefits of “fix-it” versus palliative medicine tilts toward the latter. Sometimes it is best to answer a critical question by seeking to answer several related questions, such as:

• What matters most to me (and my family) about dying and death? How would I prefer to spend my final weeks or months?
• Would I be surprised if I (or my loved one) experienced death in the next six or twelve months?
• Am I at the tipping point where more harm than good might come from fix-it medicine? (Ask this of yourself and of your trusted doctors and other healthcare providers.)

And remember: one can elect to disenroll from hospice at any time. It is not finality. It is an embrace of doing things differently at a unique crossroads in the journey of life. It is the realization that working through the gray can be good: for us, for our families, and for the communities we love.