Americans are Misinformed Are Uninformed on Hospice and Palliative Care 


73 million baby boomers in the U.S. today, and many of them have chronic health issues. Yet most patients, and even some clinicians, are seemingly unfamiliar with palliative care and what it could do for them. This is according to an article by Michael Connelly in the Fall 2023 edition of Health Progress, the Catholic Health Association’s magazine. Michael is an author and CEO Emeritus for Ohio based Mercy Health, one of largest health systems in the nation, and we credit him and the Catholic Health Association of the United States for the information shared within this blog post.

Michael says hospice and palliative care are some of the best options available to people at end-of-life, yet they remain underused. “People are afraid of what they don’t understand, and this unfamiliarity has led to an avoidance of hospice and palliative care.” Michael presents these challenges and misperceptions:

  1. Everyone Avoids Addressing Death

Individuals, families and physicians can all agree on at least one thing: They do not want to discuss death. The reality of death is so daunting, it’s hard to think about or even discuss, and our collective inability to address it only makes embracing palliative and hospice care more difficult. And the reality is, Medicare is set up for the six-month requirement because the system deems stays of more than six months as too expensive.

The leadership of Our Lady of Peace Hospice and Home Health Care continues to lobby for changes in the Medicare benefit.

  1. The words we use

The difference between hospice and palliative care is confusing. Our Lady of 

Peace has tackled a few times within previous blogs. Michael Connelly defines it:

Hospice is comfort care without curative intent — the patient no longer has curative options or has chosen not to pursue treatment because the side effects outweigh the benefits. Palliative care is comfort care with or without curative intent.

The Center to Advance Palliative Care conducted a survey in 2019 to demonstrate how specific messages and talking points can improve perceptions around palliative care. Some of the statements that scored well focused on improving life expectancy and providing the best quality of life.

  1. Insurance Rules Don’t Align with End-of-Life Care

Generally, insurers do not reimburse for palliative care provided by nonphysicians (the palliative care team consists of several nonphysicians such as nurses, social workers, chaplains and pharmacists. 

Insurance rules hurt hospice because patients are required to give up other Medicare-covered treatments for their terminal illness and related conditions to be able to access the hospice benefit. Patients are, of course, afraid of death and are reluctant to give up their options for curative treatment. As a result, patients and physicians avoid pursuing hospice until it’s too late — often delaying until a week or two before death — which significantly diminishes the value of hospice.

  1. End-of-Life Care Reform Is Ignored

According to a 2022 study in The Lancet medical journal revealed that modern society has lost its fundamental understanding of death. A worldwide commission observed that we need to release ourselves from the expectation that in old age we are obligated to fight against death with all that medicine has to offer. They argue that dying today has become a clinical experience, when not too many decades ago it was a family experience.

  1. Physicians and Their Roles: Rethinking the Care Approach

In Michael Connelly’s initial pursuit to discover reforms that would improve health care that led to his recent book, he discovered that transformation would be best achieved by improving end-of-life care. For example, if a patient needs to go on dialysis, shouldn’t they have a palliative care consultation before the nephrology one? Or, if a patient has challenging cancer, shouldn’t the patient have a palliative care consultation? 

Michael says, “In my experience as a health care executive, these were mainly for patients in intensive care units. But outpatient consultations are rare. This, coupled with the issue of not wanting to address the reality that a patient is dying, results in patients not receiving the full picture of their care choices. It also contributes significantly to fragmented care for older adults.”

Don’t give up on lobbying for a loved one.

The team approach to palliative care relies on care providers having conversations with patients and one another, but the health systems’ coding does not allow insurance payments for these critical conversations, so they are often avoided. Therefore, patients and families must ask to have these conversations. 

Insurers focus on curative care because they believe health insurance is not intended for comfort care. Therefore, they deem comfort care as not medically necessary. Consequently, insurance companies spend billions of dollars on dialysis, intensive care, transplants and heart procedures, often without questioning whether these measures are considered necessary in cases where a person is near the end of life. Therefore, patients and families must ask these questions.

Systematic change is needed. 

Both individual initiative and systemic change will be needed to reduce the stigma against palliative and hospice care. Our Lady of Peace has taken a lead in doing this with a one-of-a-kind partnership with DaVita Kidney Care. And we will continue to work towards change for the benefit of future patients and their families.