“If time were short, where would you want to be?”
As a palliative care clinician, I regularly ask my patients, or their family members, where they want to die. Having asked this of hundreds of patients, I have come to expect most will tell me that they want to be at home.
But recently I have struggled with the complex realities of dying at home, and the unintended consequences of our making it a societal priority.
It is emotionally and intellectually compelling that patients should die in their own homes, surrounded by loved ones in a comfortable, familiar environment. For patients dying of end-stage disease, be it cancer, heart disease or something else, even the best hospitals are unlikely to be able to “fix” the underlying problem. We worry that people will go through expensive and potentially painful tests and interventions that have little chance of changing the ultimate outcome. And the opportunity costs are high; time waiting for a scan or procedure could be spent getting financial affairs in order or saying goodbye.
While there are still those who subscribe to the idea that excellent health care demands doing everything possible to prolong a life, many doctors, nurses and patients prefer a less intensive approach when time is short. Rates of hospice enrollment have increased and the home has re-emerged as a place to die, not only preferred by patients and families but also heavily recommended by clinicians, especially in my field.
The system is imperfect, though. Unless a family has the significant resources necessary to hire aides or nurses, informal caregivers become responsible for nearly everything — from feeding to bathing to toileting. These tasks often get harder as the dying person weakens. In my experience, most family members want to care for their loved ones at home, but many are unaware of caregiving’s physical and emotional toll. And the length of time a patient spends in hospice care is difficult to predict, sometimes requiring caregivers to take significant time away from work or other family members.
Complicating matters, I frequently detect ambivalence in patients who tell me they want to die at home. Some are comforted by the reliability of the nursing care and easier accessibility of on demand medications. For others, dying at home may not be their top priority. Parents may want to protect their young children’s physical space from death or an elderly spouse cannot properly care for their loved one or lack the funds to hire assistance.
We should not be surprised, then, that some patients who do enroll in hospice end up back in the hospital. And yet we in palliative care often view these cases as failures. We wonder what the critical gap was that led the family to call 911 or come to the emergency department. Was the patient’s pain uncontrolled? Were medications unavailable? Did the family panic? Something must have gone wrong.
I think we in Palliative Care have adopted the wrong approach. We regularly ask patients where they “want” to die but often defer the much more complex question of “how and who” is going to care for them as they decline and explain what that caregiving role will look like. I am concerned about the unacknowledged caregiving burden for families and friends. In addition, many people with advanced disease experience escalating symptoms, like pain or shortness of breath, that even the best hospices have difficulty managing in the home. In these situations, I am caught between the passionate rhetoric of my field, the spoken and unspoken wishes of my patients, and my clinical judgment.
To be sure, dying in the hospital has its own trade-offs. Though we can make more, and faster, medication adjustments, severe symptoms can be difficult to treat regardless of the setting. And as much as we try, it’s nearly impossible to alter the health care system’s usual rhythms. We cannot guarantee that they will not be woken up by the squeal of a malfunctioning IV pump or the chaos of clinicians scrambling to help another patient. With the compounding factor of COVID-19, family and friends are prevented from being with their loved ones at critical moments and are often left to die alone.
While an inpatient hospice facility, which represents a third option, can provide hospital-level care in more of a homelike environment, Medicare and other insurance providers have set a high threshold for the few available beds. Most patients are only eligible if they are in the last few days of life or have severe, uncontrolled symptoms that would otherwise require hospitalization.
The quality and consistency of end-of-life care are not where they need to be. To ensure that all people receive the same compassionate care that we all deserve, we need to focus not only on where, but also on how they will die and who will care for them. When we view all deaths in the hospital as failures, we risk neglecting a critical opportunity to improve the dying experience for many of our community’s sickest and most vulnerable. Clinicians should elicit and advocate, whenever possible, to honor their patients’ preferences for where they want to die. At the same time, we need to acknowledge our own uncertainties and be honest — with our patients and ourselves — about the difficult trade-offs these choices entail.