Studies have shown a disconnect between where patients say they want to die and where they actually die. According to research from Stanford School of Medicine, although an overwhelming majority of Americans—about 80%—would prefer to die at home, just 20% do. In fact, 60% die in acute care hospitals, and 20% die in nursing homes.1
For those choosing to die at home, the majority of care for those patients falls to family members and friends. Limited support may be offered by hospice care agencies, who provide advice and medical equipment, such as a hospital bed, oxygen machine, and wheelchair, and about 30 minutes a day of professional services from a nurse or aide, as well as some additional MD/ RN visits and expertise. However, family members are usually left on their own and may be unprepared and overwhelmed by the extent of care patients at the end of life need, including administering medications, feeding, bathing, toileting, and attending to patients’ typical end-of-life symptoms, such as breathing difficulty and confusion. The chronic physical stress of family caregiving coupled with the emotional distress of seeing the steady decline in a loved one’s health can lead to myriad health problems, including high blood pressure, diabetes, a compromised immune system, fatigue, anger, and depression—a cluster of maladies now recognized as caregiver syndrome.2
Richard Leiter, MD, MA
“Unless a family has the significant financial resources to hire nurses and aides to supplement in-home hospice care, informal caregivers become responsible for nearly all of the care of their loved one. These tasks become progressively more difficult as the dying person weakens,” said Richard Leiter, MD, MA, Palliative Care Physician and Researcher in the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute and Brigham and Women’s Hospital and Instructor of Medicine at Harvard Medical School. In a wide-ranging interview with The ASCO Post, Dr. Leiter discusses the complex realities and unintended consequences of dying at home.
Pros and Cons of In-Home Hospice Care
What are the challenges for family members who take on the responsibility of caring for their loved one in the in-home hospice setting?
Overall, my view is we need to ensure that patients and their families have the support they need wherever the patient dies—whether it be the hospital, nursing home, hospice facility, or home. Each of those places has its pros and cons, and the trade-offs are real.
The main challenge for in-home hospice caregivers is they become the primary caregivers for their family member. Although the vast majority of hospice care is superb, as patients become sicker, they require around-the-clock care. That responsibility often falls to family caregivers, who are not always prepared to supply that type of intensive care.
And it is difficult for patients and family caregivers to anticipate in the abstract exactly how the dying process will unfold and the level of care that may be needed.
That’s exactly right. As a palliative care physician, I have many conversations with hospitalized patients about their end-of-life wishes and the transition to in-home hospice care. Many patients and families do not know what it is like to provide hospice care on the front lines. In a way, family caregivers become front-line health-care workers, and that’s asking a lot of them, because there are many aspects to that care.
To begin, there is the psychological adjustment of transitioning from family member to primary caregiver. Then, there is the provision of necessary physical care, including giving medications and changing and bathing the patient. There also are certainly financial consequences if the caregiver has to give up a job or the added stress of balancing work and caring for a loved one.
This is not to say that families are not willing to take on these responsibilities, because the vast majority are. However, many families do not understand what they are getting into when they agree to provide end-of-life-care for their loved one. And, it’s not their responsibility to know what this care entails. It is our responsibility to have these difficult conversations with our patients and their family members. Although in-home hospice might be the best option, we need to tell them what they need to know to make an informed decision.
The depth of these conversations varies from patient to patient. First, we have to discuss the symptoms the patient is experiencing and how those symptoms will be managed in the home setting. That will differ depending on the type of cancer the patient has and its symptom trajectory. For example, we must consider how well a patient’s pain can be relatively controlled in the home setting. If we are having trouble controlling symptoms like pain in the hospital, I would worry about how it might be controlled at home. If we are having to rapidly escalate intravenous opioids for pain or provide intravenous antipsychotics for delirium, I would be nervous about sending that patient home. If we think the complex end-of-life care a patient needs should be administered by a nurse or physician on a regular basis, that may be difficult to do in the home setting.
Understanding Patients’ Priorities for Place of Death
What is the most important consideration when determining which patients would benefit most from in-home hospice care?
Number one is understanding patients’ goals, values, and what is important to them at the end of life. If you ask most people where they prefer to die, they will say at home. However, we know from studies looking at patients’ priorities for end-of-life care that the place of death ranks low on the list. Other priorities, such as not having pain and not being a burden on their family, may be more important to many patients, so understanding patients’ priorities is essential. Understanding the family situation and making sure there is a family caregiver who can take on this responsibility are also critically important in helping patients make their end-of-life plans.
“Other priorities beyond the place of death, such as not having pain and not being a burden on their family, may be more important to many patients.”— Richard Leiter, MD, MA
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What is so difficult about these conversations is that often these questions we pose to patients can sound like we’re making a value judgment about their families, and we are not. Family circumstances are what they are, and for most families I’ve worked with, they were able to honor their loved one’s end-of-life wishes. However, even the most loving families are sometimes unable to make in-home hospice work; the responsibility may be just too challenging.
In my field of palliative care, we ask patients and family caregivers to think about their overarching goals and values and whether the care required matches up with those goals and values. When we talk about the place of death, we need to be specific about what in-home hospice care might look like, so patients and their caregivers have a realistic understanding of what that care might entail.
For many family caregivers, honoring their loved one’s wishes is incredibly meaningful and an act of love they carry with them as a gift for the rest of their lives. Everyone’s inclination in this circumstance is to say, “Yes, let’s do this,” especially in front of the patient. We need to provide better support for family caregivers, because we see the adverse effects this work can have on people, and that is a societal responsibility.
I don’t want to underestimate the comfort many patients experience being in their own home surrounded by their possessions and their loved ones, as well as the benefit caregivers receive. We just need to make sure we are providing them with the most support we can and painting an accurate picture of what home care involves.
To borrow a construct from quality-improvement literature, in my opinion, the place of death is a process measure, not an outcome. We have to understand what we need to do to provide patients with the most peaceful and comfortable death possible, wherever that might be: hospital, nursing home, hospice care facility, or home.
“To borrow a construct from quality-improvement literature, in my opinion, the place of death is a process measure, not an outcome.”— Richard Leiter, MD, MA
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Defining a Good Death
What constitutes a “good death?”
A good death may mean something different to different patients and their families; understanding that its definition is patient-specific is a large part of my job. Some patients will say their biggest concern is pain and suffering at the end of life. Others will say they want to be alert and awake for as long as possible to be with their family, even if it means bearing some additional pain. Other patients will say a good death is being at home surrounded by their family. So, there is no universal definition of what constitutes a good death.
Dying in the Era of COVID-19
How has the COVID-19 pandemic impacted patients’ choices for where and how they want to die?
We don’t have a complete picture yet because the situation is evolving so quickly. The COVID-19 pandemic has presented serious challenges on how we provide end-of-life care to patients with cancer. I have been embedded in our COVID intensive care unit (ICU) since the pandemic first hit Boston, and for many patients, there can be a rapid escalation of serious symptoms. It is especially tragic, because many of the patients with advanced cancer I’ve treated in the ICU were doing well before, and there was reason for optimism. Then, they became infected with COVID, and that is what ended their life.
The pandemic has fundamentally changed the story for how we care for patients, especially our seriously ill patients.
DISCLOSURE: Dr. Leiter has received honoraria from The New York Times.
1. Stanford School of Medicine: Where do Americans die? Available at https://palliative.stanford.edu/home-hospice-home-care-of-the-dying-patient/where-do-americans-die. Accessed June 4, 2020.
2. Small B, Family Caregivers’ Network Society: Caregiver Syndrome. Available at http://www.familycaregiversbc.ca/wp-content/uploads/2012/12/Caregiver-Syndrome.pdf. Accessed June 4, 2020.