As America’s hospices treat the dying and compete for referrals, a vast contingent of terminally ill Americans are dying in places they don’t want to be, receiving treatments that won’t save them.
Reversing this trend will take more than effective marketing. At some point, as a society, we have to reconsider how we think about death – and hospices will play a vital role in that discussion.
A commission convened by the UK-based research journal The Lancet has called on the global medical community and the public to reconsider societal attitudes towards death and the care that comes before it. Among the recommendations is an overhaul of the overmedicalization of death and a greater emphasis on palliative and palliative care.
The Lancet Editors and Academics Commission stated principles to guide this process, including what they call “the social determinants of death”, as well as the reassessment of cultural attitudes towards the end of life and the strengthening of networks of care for the dying and those bereaved.
A major 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. Physicians, patients, or family members may find it easier to avoid them altogether and continue treatment, leading to inappropriate treatment at end of life,” the commission wrote. “Palliative care can offer better outcomes for patients and caregivers at end of life, leading to better quality of life, often at lower cost, but attempts to influence mainstream health services have had limited success. and palliative care globally remains a response service based on this social concern.
The authors use the term ‘palliative care’ to include palliative care, although in practice the two services are separate.
The type of conversation that the commission proposes corresponds to both the mission and the activities of the hospice.
In financial terms, providers want to grow, build their patient base and maintain a healthy balance sheet. On a human level, this same focus on growth means that more patients will have access to goal-fit care in their final days.
To be clear, a patient and family have the absolute right to choose to pursue aggressive treatment if that is indeed their wish. The aim is to ensure that 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 the medical community about the benefits of the care they provide and the potential effects of overmedicalization. These discussions are often geared around the practical concerns of containing costs and achieving better patient outcomes – empirical considerations more likely to pique the interest of policymakers and clinicians.
The economic benefits of reducing intensive care use are well established. Enrolling patients in palliative care earlier in their terminal illness can reduce Medicare costs by $316 million to $2.43 billion, depending on length of stay and patient population characteristics , according to a 2019 study guidance note of the National Hospice and Palliative Care Organization (NHPCO).
With respect to the patient and family experience, research indicates that dying at home in a palliative care facility is correlated with improved quality of life for patients, compared to those dying in hospital. Family members of hospice patients also tended to have a reduced incidence of post-traumatic stress disorder and prolonged grief disorder while reporting greater satisfaction with the care received by loved ones.
Again, underlying these conversations are deeper and more complex questions: How do we, as individuals and as a society, confront our fears about the end of life? How can we take what we learn and use it to create a system that better supports patients and families dealing with terminal illness?
These are the questions the Lancet Commission seeks to answer.
The Lancet articles are a recent manifestation of a growing movement to “demedicalize” the experience of death. This does not mean the denial of medical care to the dying, but rather the recognition that death is more important than medicine.
“Health care has a role to play in caring for the dying, but end-of-life interventions are often overkill, exclude contributions from family and friends, increase suffering, and consume resources that could otherwise be used to respond. other needs,” the Lancet Commission said. observed.
This is certainly the case in the United States.
Nearly 80% of people in the United States say they would rather die at home, but nearly 60% reach end of life in acute care hospitals, according to Data from Stanford University School of Medicine.
Somewhere along the way, patient values got eclipsed by system values. Health care as a whole has become less about patient needs and more about moving them through the system’s own processes.
Medical training and the culture of health care are focused on curing 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 until 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 services, relationships, discrimination or oppression, poverty, education and many more,” the commission wrote. “These non-medical aspects of why, how and where people die or mourn are understood collectively as the determinants social and structural aspects of death, dying and mourning.”
An emerging movement seeks to nudge the healthcare system away from the entrenched mindset and toward the mindset that most palliative care providers have traditionally embraced: that patients have the right to choose how they wish to live through their final days and that their care should reflect those wishes.
The tragic reality of the pandemic presents us with an opportunity to move this conversation forward. Globally, we are facing death on a scale that many of us never imagined. In the United States alone, the death toll from COVID-19 is rapidly approaching one million, according to the United States Centers for Disease Control & Prevention.
The pandemic has deprived many patients of the benefits of palliative care. The Medicare Payment Advisory Commission (MedPAC) reported last year that hospice use fell to 47.8% among Medicare decedents in 2020, from 51.6% in 2019. This drop, the first for several years, was “not unexpected” given the pandemic, according to MedPAC.
So far, according to the Lancet authors, the pandemic has taken us even further away from death in its full context, relegating it even further into the medical sphere as more and more patients die in hospitals, on ventilators. or saying goodbye through a computer screen or a pane of glass.
Changing this direction won’t be quick or easy, but palliative care providers are uniquely positioned to help this movement gain momentum. They understand better than most the human and economic costs of aggressive treatment.
They have the training, experience and expertise to educate their colleagues in the wider healthcare community and to help guide patients through some of the toughest decisions most of us will ever have. to take.