As U.S. hospices care for the dying and compete for referrals, a vast contingent of terminally ill Americans die in places they don’t want to be, receiving treatments that will not save them.
Turning this tide will require more than effective marketing. At some point, we as a society need to reconsider how we think about death – and hospices will have a critical role in that discussion.
A commission convened by the United Kingdom-based research journal The Lancet has called on the global medical community and the public to reconsider societal attitudes about death and the care that precedes it. Among the recommendations is a rethink of the over-medicalization of death and greater emphasis on hospice and palliative care.
The commission of Lancet editors and academic scholars outlined principles to guide this process, including what they call “the social determinants of death,” as well as reassessment of cultural attitudes about the end of life and strengthening networks of care for the dying and the bereaved.
A key obstacle to this kind of change is simple to name but difficult to overcome: We don’t want to talk about it.
“Conversations about death and dying can be difficult. Doctors, patients, or family members may find it easier to avoid them altogether and continue treatment, leading to inappropriate treatment at the end of life,” the commission wrote. “Palliative care can provide better outcomes for patients and carers at the end of life, leading to improved quality of life, often at a lower cost, but attempts to influence mainstream health-care services have had limited success and palliative care broadly remains a service-based response to this social concern.”
The authors use the term “palliative care” to be inclusive of hospice, though in practice the two services are distinct.
The type of conversation the commission proposes aligns with both the mission and the business of hospice.
In financial terms, providers want to grow, build their patient census and maintain a healthy balance sheet. In human terms, this same emphasis on growth means that more patients will have access to goal-concordant care in their final days.
To be clear, a patient and family has an absolute right to choose to pursue aggressive treatment if that is indeed their wish. The objective is to ensure they can make an informed choice with a clear understanding of the options available to them, after careful consideration of their own goals.
Hospice and palliative care providers have worked to educate the public and medical community about the benefits of the care they provide and the potential effects of over-medicalization. These discussions are often oriented around the practical concerns of containing costs and achieving better patient outcomes — empirical considerations more likely to pique the interest of lawmakers and clinicians.
The economic benefits of reducing high-acuity utilization are well-established. Enrolling patients in hospice earlier in the course of their terminal illness can reduce Medicare costs by $316 million to $2.43 billion, depending on length of stay and characteristics of the patient population, according to a 2019 policy brief from the National Hospice & Palliative Care Organization (NHPCO).
In terms of the patient and family experience, research indicates that dying at home with hospice correlates with improved quality of life for patients, compared to those who die in hospitals. Family members of hospice patients also tend to have reduced incidence of posttraumatic stress disorder and prolonged grief disorder while also reporting higher satisfaction with the care their loved ones received.
Again, underlying these conversations are deeper, more complex questions: How do we as individuals and as a society confront our fears regarding the end of life? How do we take what we learn and use it to build a system that better supports patients and families facing terminal illness?
These are the questions that the Lancet Commission seeks to unravel.
The Lancet papers are a recent manifestation of a growing movement to “demedicalize” the dying experience. This does not mean denial of medical care to the dying, but instead is a recognition that death is bigger than medicine.
“Health care has a role in the care of the dying, but interventions at end of life are often excessive, exclude contributions from families and friends, increase suffering, and consume resources that could otherwise be used to meet other needs,” the Lancet Commission observed.
This is certainly the case in the United States.
Nearly 80% of people in the U.S. say they would prefer to die at home, but close to 60% reach the end of life in acute care hospitals, according to data from the Stanford University School of Medicine.
Somewhere along the way, the values of the patient became overshadowed by the values of the system. Health care writ large has become less about patients’ needs and more about moving them through the system’s own processes.
Medical training and health care culture is oriented around the curing of disease, often with the perception that aggressive treatment is almost universally the most responsible clinical course. In this paradigm, death is the enemy, and the health care system will fight it to the patient’s last breath — with their quality of life often becoming collateral damage.
“Individual or community experiences of death, dying, and bereavement are determined by a constellation of factors such as political unrest or conflict, access to and trust in health-care services, relationships, discrimination or oppression, poverty, education, and many others,” the commission wrote. “These non-medical aspects of why, how, and where people die or grieve are understood collectively as the social and structural determinants of death, dying, and bereavement.”
An emerging movement seeks to prompt the health care system to move away from the entrenched mentality and closer to the mindset that most hospice providers have traditionally held: That patients have a right to choose how they wish to live during their final days and that their care should reflect those wishes.
The tragic reality of the pandemic affords us an opportunity to advance this conversation. Globally, we are confronting death on a scale many of us never imagined. In the United States alone, the number of COVID-19 fatalities is rapidly approaching 1 million, according to the U.S. Centers for Disease Control & Prevention.
The pandemic has denied many patients the benefits of hospice care. The Medicare Payment Advisory Commission (MedPAC) reported last year that hospice utilization dropped to 47.8% among Medicare decedents in 2020, down from 51.6% in 2019. This decline, the first in several years, was “not unexpected” given the pandemic, according to MedPAC.
Thus far, the Lancet authors contend, the pandemic has further separated us from death in its full context, relegating it even further into the medical sphere as more patients die in hospitals, on ventilators or saying their goodbyes through a computer screen or a pane of glass.
Changing this direction will not be quick, nor will it be easy, but hospice providers are uniquely positioned to help this movement build momentum. They understand better than most the human and economic costs of aggressive treatment.
They have the training, the experience and the expertise to educate their colleagues in the wider health care community and to help guide patients through some of the most difficult decisions most of us will ever have to make.
Companies featured in this article:
National Hospice and Palliative Care Organization, Stanford University, The Lancet
