The announcement that 98-year-old Jimmy Carter has made the decision to forego additional curative treatments and instead enter hospice care at his home in Plains, Georgia was, for many, a reminder (or even an introduction) to what hospice care is and what it can offer. Remaining in the only home he has ever owned and has lived in since 1961, Carter’s choice to live out his final days surrounded by family and hospice providers symbolizes the ideal goal for the overwhelming majority of us at life’s end: to be in our own home, with the love, support, and comfort that family and a skilled professional care team can provide. In fact, when asked, most of us would like to die “at home” and, since 2017, homes have surpassed hospitals as the most common place of death in the United States.

Having a quality hospice team in place can allow for the sort of peaceful, dignified home death that we hope for. As a reminder, the goal of hospice care is to provide pain management and symptom control and to enhance and support quality of life as a patient enters her final period of life. Primarily through nurses, home health aides, social workers, and chaplains, along with medical equipment and medications, hospice can support and comfort the patient and family as they “give up the fight”, a difficult concept for so many to embrace. It can grant the patient a renewed (even if temporary) quality of life after the brutal side effects from treatments for a serious, life-threatening illness that can sap your will to live. And despite the fact that some still misunderstand the goals of hospice care (no, hospice care does not intentionally hasten someone’s death), in fact, research has shown that hospice patients have higher levels of satisfaction and lower rates of depression at the end of life than those who receive more traditional, cure-oriented care. Generally speaking, patients in hospice have better pain control than those not in hospice and spend fewer days in hospitals at the end of their lives. Most people have their hospice care paid for through Part A of Medicare, even if they have a Medicare Advantage policy.

When everything goes according to plan, hospice can allow for a peaceful end-of-life experience for patients and families. But not everyone can live (and die) according to this ideal. For some patients, their end-of-life symptoms are simply too overwhelming for their families to manage at home. For patients whose symptoms cannot be controlled in a home setting, insurers (primarily Medicare) permit temporary in-patient care to allow for better palliative treatments to ease pain and other end-of-life symptoms. And there are some free-standing hospice programs or hospice beds inside of other healthcare facilities, But the reality is that hospice is primarily a system of care delivered in a patient’s home, or, if the patient lives in assisted living or a nursing home, in that facility. 

To be clear, hospice care is not round-the-clock care in the home. What that means is that, especially in the home setting, family, friends, paid caregivers, or other volunteers must provide much if not most of the hands-on care. There is limited availability of skilled nurses or home health aides through a hospice benefit. The family must be willing and able to deal with the demands of intimate caregiving as a person’s life comes to a close. And for some this can become overwhelming- and costly. In fact, if home health aides need to be hired to supplement the care of the hospice team, that can potentially run into tens of thousands of dollars, depending on the patient’s condition, length of time the care is needed, and the availability of unpaid caregivers to help. Recently, one geriatric nurse practitioner wrote about her own family’s struggle with supporting a loved one living in the community as her life came to an end and at a cost to the family of over $100,000.

Moreover, not every hospice program offers the same, high quality. As with all types of health care, it pays to do your homework and to understand your options  The National Association for Home Care and Hospice has a series of questions to help guide you through your interviews with potential hospice providers. And these days, given the extensive number of for-profit hospice providers, it’s especially important to understand whom you’re dealing with. Hospice is now a $22 billion business, and a significant number of hospice providers are owned by private equity firms. While a for-profit hospice program may provide excellent care, you’d be wise to understand whether such a provider has had any problems or citations for inferior care. A recent study published in JAMA Internal Medicine found that family caregivers reported poorer care experiences with for-profit hospice providers but also found that the quality of care among hospice providers can vary greatly, whether for-profit or not-for-profit. In other words, the profit status of the provider isn’t a guarantee of the type of care you will receive. Pro-Publica also published an extensive and revealing portrait of serious problems with many for-profit hospices that place profits above patient care. It’s a frightening picture of just how poor quality of care can be when there’s money to be made- and a far cry from the idealized end-of-life scenario we all hope for. So put aside your rose-colored glasses, and educate yourself here.