Why Family Members Wait Too Long to Call Hospice


Admitting that a loved one’s health has declined so much that pursuing further curative treatment is either impractical or impossible is a hard thing to do. Choosing comfort care is usually the next step, but many patients and their family members hesitate or second-guess themselves when this delicate decision arises. However, families can lose out on valuable time with terminally ill loved ones if they wait too long to start hospice care.

Delaying Hospice Deprives Patients of End-of-Life Care

According to the National Hospice and Palliative Care Organization (NHPCO), a whopping 53.8 percent of Medicare hospice patients received comfort care for 30 days or less in 2018. Of this same cohort of beneficiaries, more than a quarter (27.9 percent) received hospice services for only a week or less. While hospice care is meant for individuals with an estimated life expectancy of six months or less, the data suggest that families are not seeking this specialized care until the last minute.

“The full benefits of hospice care cannot be experienced in just a day or two,” explains Myles Zuckerman, MD, HMDC, team physician at Family Hospice in western Pennsylvania. “It makes me sad to get calls from family members who realize their loved one is dying within a few hours or days because they can’t make the most of the care we provide.”

Of course, a reluctance to talk about and accept death is part of why hospice is seen by many as a last resort, but a lack of information and even misinformation about the services hospice provides also contribute to delays in care.

The Benefits of Hospice Care

Terminally ill individuals often experience pain as they approach the end of life. One of the most well-known goals of hospice care is to enhance a dying person’s quality of life by alleviating as much of this pain as possible. The sooner a senior receives a hospice referral, the sooner they are able to get relief from pain and other physical symptoms in lieu of curative treatment.

But hospice care encompasses far more than symptom management. Multidisciplinary hospice care teams consist of multiple professionals, including physicians, nurses, aides, social workers, psychologists, volunteers, musicians, therapists and spiritual counselors. This team works together to help patients and their families cope with the all the physical, spiritual and emotional aspects of dying.

This holistic care approach and focus on maintaining quality of life can make it possible for a senior to have more pain-free quality time to spend with their loved ones. Furthermore, hospice care can reduce the likelihood that a patient will spend their final months, weeks or days bouncing in and out of the hospital—a common scenario that proves to be very stressful, upsetting and expensive for patients and families alike.

Why Family Caregivers Are Reluctant to Begin Hospice Care

What makes a family caregiver hesitate to seek out information about hospice or delay asking for a referral for services? In some ways, it’s all about perception.

Hospice has a potent stigma attached to it. Viewed as a last resort or something to try when all other medical options have been exhausted, hospice is often associated with giving up and giving in to the inevitability of death. This type of care is also commonly associated with terminal cancer diagnoses, but hospice is beneficial for people with a wide range of chronic and terminal illnesses. Proper end-of-life care ensures dignity, comfort and control for patients in the later stages of Alzheimer’s disease or other types of dementia, Parkinson’s disease, chronic obstructive pulmonary disease (COPD) and heart failure just to name a few.

Gail Gazelle, MD, assistant professor of medicine at Harvard Medical School and associate scientist at the Brigham and Women’s Hospital, says that many families engage in wishful thinking when death is near. Deep down they believe that if they refuse to talk about the fact that a loved one is dying, then perhaps it won’t actually happen.

Another common concern is that broaching the topic of end-of-life care with an ill loved one may cause them to become depressed. While these feelings are both valid and understandable, they can also cause a caregiver to delay starting hospice and create unnecessary suffering for both a dying elder and their family.

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Quantity of Life vs. Quality of Life

A medical culture that makes doctors, patients and family members reluctant to admit “defeat” further devalues the benefits of hospice, which focuses more on caring for a person than attempting to cure their disease. We assume (and hope) that advances in modern medicine can somehow treat all our ailments, but for many chronic illnesses, the best that medicine can do is delay the inevitable.

Research has found that seniors often receive unnecessarily aggressive medical treatments in their last few weeks of life. A 2019 study published in JNCI Cancer Spectrum compiled treatment data from 100,848 patients with various types of imminently fatal metastatic cancer who died within one month of diagnosis. Researchers found that 28.3 percent of colorectal cancer patients underwent surgery, 11 percent of lung and breast cancer patients received chemotherapy, and 18.7 percent of lung cancer patients received radiotherapy in the final month of life. These aggressive treatments are known to be painful and cause bothersome symptoms and complications that seriously undermine a patient’s remaining quality of life.

While this study addresses advanced cancer, Judy Bartel, MSN, ACHPN, CHPCA, FPCN, chief clinical officer for Hospice of the Western Reserve, points out that many people don’t acknowledge that a disease is terminal and progressive. “I can’t tell you how many times I hear, ‘My mother has a little bit of heart failure,’ or that a senior with COPD has a ‘little bit of a breathing problem.’ ”

This issue is caused, in part, by miscommunication between doctors, patients and caregivers. Dr. Gazelle feels that efforts must be made to better educate physicians on the merits of hospice and how to broach the topic of end-of-life care with patients and their family members. She also acknowledges the vital role that caregivers play in these discussions. “It is critical that families begin to feel more empowered to name the truth and not wait for the physician to initiate the discussion,” she urges.

When to Call Hospice

So, how do you know when to call hospice for elderly loved ones? Unfortunately, the answer to this question is far from simple. It can be challenging even for physicians to pinpoint when further medical care would do a senior more harm than good, so caregivers should not be responsible for making this decision alone. The best way to address end-of-life care decisions is to have candid conversations with your loved one and their physician(s) about their prognosis, treatment options and their personal wishes.

“We’re all guilty of having that Pollyannaish view of things—no one wants to face the fact that there comes a point where there’s nothing else medicine can do,” Dr. Zuckerman acknowledges.

Facing reality is difficult, but after an honest care team meeting, you’ll be able to ask lingering questions and at least have current answers regarding your loved one’s condition to help you all weigh your options. In some cases, a patient may not be capable of participating in this crucial decision, which underscores the importance of discussing end-of-life care and drafting important legal documents like advance care directives, a living will and medical power of attorney early on.

If a loved one wishes to continue receiving curative treatment indefinitely, it’s important to respect their wishes and continue advocating for them. Just make sure they are aware of all their options both for ongoing treatment and for comfort care. Furthermore, be aware that their priorities for health care may change as their condition worsens.

Don’t hesitate to seek outside advice, either. While a physician’s order is needed to actually begin hospice services, anyone can contact a provider to request information about them. If it is determined that a senior is not yet a candidate for hospice care, this in no way precludes them from receiving services later. If anything, asking questions about end-of-life care early on will help you be more prepared for when the time comes. Some families even research local hospice providers, their policies and their payment methods before services are needed to ensure they are wholly prepared.

If your loved one is hospitalized, ask to meet with a palliative care professional if there is one on staff. These individuals specialize in relieving the physical and emotional pain associated with curable, chronic and terminal medical conditions. A palliative care professional will be able to provide you with information and guidance regarding both ongoing symptom management and hospice care.

For seniors who reside in assisted living communities or nursing homes, Dr. Zuckerman suggests soliciting the advice and opinions of the staff members who take care of them on a daily basis. They’ll have a keen understanding of a resident’s physical condition and how it’s affecting their quality of life.

If you’re caring for a loved one at home, their primary care doctor can be a source of information. But, Dr. Zuckerman cautions against waiting for a senior’s physician to broach the subject of end-of-life care options. He says that doctors often lack the time necessary to sit down and address this delicate issue properly.

Making the decision to pursue hospice for an elderly family member isn’t easy, but it’s important to acknowledge the potential benefits of this specialized kind of care. Dr. Zuckerman believes that hospice can offer much-needed hope and comfort for people who are dealing with a terminal illness. “Even when there’s no hope for a cure, there’s still hope,” he reassures. “There’s hope for more pain-free days and more quality time with family and loved ones.”

Sources: 2020 Edition: Hospice Facts and Figures (https://www.nhpco.org/wp-content/uploads/NHPCO-Facts-Figures-2020-edition.pdf); Treatment Patterns Among De Novo Metastatic Cancer Patients Who Died Within 1 Month of Diagnosis (https://doi.org/10.1093/jncics/pkz021)

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