By Jennifer Eitingon, MD,  with Margaret P Battin, PhD

When asked about the often serious ethical quandaries hospice providers are often faced when providing care for a patient nearing death, the one thing that plagues most is not the medical aspect of how to manage suffering, nor the existential questions of how we, as embodied individuals can face our own mortality, but the financial matters that are not clearly revealed.

For example, when a patient is referred to hospice, often by their primary care provider or specialist, the patient will recognize that this means the end is coming and will be provided with information about enrollment. This information may include details about the financial requirements of hospice, although given the emotional distress often associated with making the decision to enroll in hospice, this is often not heard clearly. Under Medicare, which most hospice patients in the United States are receiving, when someone is receiving inpatient care for an acute symptom crisis, (e.g. uncontrolled pain or breathlessness and need continuous oversight and intervention by a physician and care team) their care is fully covered at a rate of about $1,000/day, adjusted by geographic location. This is in comparison to the routine rate of hospice reimbursement where care is typically provided at home, of about $200/day, adjusted by geographic location. If a patient survives the symptom crisis, which many do, but still need a substantial level of custodial care that exceeds their lay caregivers capabilities , the room and board provided in the hospice center is not paid for by the Medicare program.  As a result many hospices charge a room and board fee to patients, upwards of 300$/day if the patient and their family cannot take them home given their elevated care needs. Even with the cost implemented to buffer the reduced rate of reimbursement from Medicare, hospices still fall short of covering the expenses needed to run a care facility. If the patient has Medicaid these patients can be cared for in nursing homes and have their room and board covered.  Unfortunately, in many states the Medicaid program will not pay a hospice center this same room and board fee.

I, as a hospice physician, often face patient and family questions about the expenses of hospice and continuing inpatient care and find myself standing with families as they are put in a position where they have to calculate the monetary worth of each day their loved one lives. I see the wheels turn in a family member’s head when they try to multiply my humble prognostic estimate with the daily room and board fee or cost of 24-hour care at home, and ask themselves what they can afford. Sometimes they ask for a more precise prognosis and are distressed when I am unable to answer their questions with more certainty. The challenge is to respond compassionately to financial concerns which may be of utmost concern to the patient or their family, understanding that they are directly weighing their choices while calculating the number of days that they themselves or their loved one might have left to live. Along with the support of compassionate and knowledgeable social workers, we navigate these questions delicately, although we struggle philosophically. As clinicians, we generally don’t believe that we should prioritize concerns about money in considerations of care, but when over 40% of American’s have some type of medical debt, the reality is unavoidable.

Some non-profits have charity care funds, although these may not be adequate to meet the needs of multiple patients, or patients may not qualify. Some hospices may be able to absorb the financial cost of these patients; others may not be able to. Fortunately, the hospice that I work for is often able to provide financial support for room and board as well as a 22-bed residential hospice facility in Baltimore City, although the need for these services often exceed availability.

Even though as a physician I am fully qualified to manage one’s medical care, I cannot reliably help them with insight into the financial impact of their medical choices, though this is what is asked of me. Ultimately, the financial impact of care may be a central feature in my patient’s medical decision-making. The solution is more comprehensive coverage of elderly care included in the Medicare benefit. Until then, patients and families deserve transparency in the communication of what their end-of-life care will cost, including the potential cost associated with personal care services they may not have expected. Our unwillingness to engage in transparent conversations about the end of life has not only stunted us emotionally, but have left clinicians like myself ethically conflicted and forced to hand over the bill for care to unsuspecting and grieving families and friends.

I’m a hospice physician. I am trained to tell my patients and their loved ones what I know about dying and provide expert symptom management and support. Instead of practicing these skills, I find myself in the position of counseling families through the challenge of calculating the potential costs of care at the end of life. Often, families admit to me that they hope their loved one does not have a prolonged death – not only because they are worried about the patient suffering, but because they are worried, they will not be able to afford the care involved. Often, I feel like a liaison for Medicare, explaining a policy lacking compassion and nuance to unsuspecting and grieving family members. I worry that putting physicians in the roles of being the “cost-of-care translator” shifts focus away from patient-centered care and erodes trust in the therapeutic relationship. I am trained to discuss dying compassionately, exploring humanity, autonomy and dignity during a sacred transition. Instead, the counseling I am obligated to provide frames dying as a fiscal liability.

This piece is written from the perspective of Dr. Jennifer Eitingon, a practicing hospice physician in Maryland and student of bioethics. Dr. Margaret “Peggy” Battin is a philosopher, medical ethicist, and has been named “One of the Mothers of Bioethics” by members of her field. Peggy offers her generous perspective and friendship while discussing some of the challenges associated with end-of-life care with the first author.

Authors: Jennifer Eitingon, MD, and Margaret P Battin, PhD

Affiliations: JE: Gilchrist Hospice, Johns Hopkins University School of Medicine ; MPB: University of Utah

Competing Interests: None to declare

Social Media Accounts: Instagram: @jennifer.eitingon  ;  LinkedIn: @jennifer-eitingon