Comment: Hospice care isn’t giving up; it’s a gift of time, love

End-of-life care offers patients and families comfort, better quality of life and time to say goodbye.

By Sylvia Beer / For The Herald

Hospice care made front-page headlines in February when the family of Jimmy Carter announced he would forego additional medical care aimed at a cure and instead would enter home hospice to spend his remaining days with family. Some three months later, the 98-year-old former president is still alive, demonstrating the value of accepting hospice care earlier rather than later.

Hospice care focuses on keeping patients comfortable while not prolonging life with curative treatments. Hospice provides in-home visits, medications, medical equipment and supplies.

The hospice care team includes a physician, nurse, social worker, chaplain, hospice aide and sometimes an occupational therapist. Hospice addresses physical, psychosocial and spiritual needs and follows the wishes of the patient and their defined family unit.

Patients can receive hospice if a doctor determines they have a life expectancy of less than six months. Hospice is paid for by private insurance, Medicare or Medicaid.

Although people enter hospice care at the ends of their lives, it does not predict how long that life will be. In fact, studies have shown that those who receive hospice care earlier often live longer and report an improved quality of life because their care is focused on comfort.

An often-cited 2010 study of lung cancer patients found that those who received hospice care early had a better quality of life and lived longer. A March 2023 study by the National Hospice & Palliative Care Organization, the National Association for Home Care and Hospice, and the National Opinion and Research Center at the University of Chicago, shows that among Medicare patients, longer hospice stays reduced health care costs in the last year of life by as much as 11 percent. Increased satisfaction and quality of life, reduced physical distress including pain control, and decreased emotional distress for patients were noted for patients who were on hospice longer. Their families also experienced reduced prolonged grief and other emotional distress.

Sometimes people ask if entering hospice care means they have “given up.” We don’t view it that way. Instead, we honor their life away from curative treatments that no longer have any benefit. Hospice care includes providing aggressive symptom management and pain control.

We ask our patients what is important to them, what do they want to accomplish in the time they have left, and what legacy do they want to leave. We help them fulfill their wishes. When we focus on quality of life and what matters most, it can sometimes extend their life.

As a result, we encourage patients with terminal illnesses to enter hospice care as soon as possible so that they can take advantage of all the services offered. This includes the ability to get ahead of symptoms that might be expected as an illness progresses, to plan for end-of-life, and to live their last days as they wish, rather than in a pain or symptom-management crisis.

Because those who enter hospice care early have the time to plan, they can enjoy their last months, weeks or days with friends and family. President Carter’s time with hospice has given his loved ones time to celebrate him while he is alive. We know he has planned his funeral because President Biden announced that Carter had asked him to deliver his eulogy.

Just as people plan for a good birth by hiring a doula and getting pre-natal care, one way to look at hospice care is that it allows patients and their families to plan for a good death. We have witnessed estranged family members reuniting, patients writing personal memoirs and passing along favorite recipes. We’ve seen young hospice patients recording messages or writing letters to children who will face milestones without them. We have witnessed end-of-life parties where patients enjoyed the company of loved ones while still well enough to participate.

Talking about the end of life is difficult. And yet, having a plan and knowing what options are available make these challenges easier to face. Hospice care for each patient is different and sometimes it can be offered in combination with treatments historically believed to be curative. We offer hospice care to patients who may currently be receiving dialysis, those needing blood transfusions and patients requiring ventilator support for comfort.

Anyone can call a hospice agency to ask questions. No one is pushed into end-of-life care that they are not ready to accept. But for those with a terminal illnesses — whether it is cancer, congestive heart failure, kidney disease, ALS, or another life-shortening disease — accepting hospice care as early as possible can be beneficial; not only for the patient, but for family members as well.

Sylvia Beer is director of Providence Hospice and Home Care of Snohomish County.

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