Facing our mortality can be scary. We live in a “fix-it” culture wherein brilliant minds have developed treatments and technologies intended to cure what ails us and keep us a little further from death. These interventions are successful in so many cases, but what do we do when the time comes that what ails us can’t be cured? There is a path forward that many among us know little about: hospice. As a bedside nurse at a dedicated hospice residence in St. Paul, Minnesota, here are ten things I would like people to know about hospice:
What is hospice?
Hospice is a philosophy of managed care that emphasizes quality of life for dying people and their loved ones, provided by specialized teams of interdisciplinary caregivers. It is for people estimated to have six months or less to live, who decide not to pursue curative treatment and instead choose to focus on comfort and dignity through end-of-life.
How does hospice care differ from palliative care?
Hospice care, sometimes called comfort care, is care for people nearing end-of-life who forgo treatment intended to try to cure their terminal disease. Palliative care is similar, in that it also focuses on managing symptoms to provide comfort and dignity, but it is available at any point during a person’s illness journey and can accompany curative treatments.
Where did hospice care come from?
The development of hospice care as we know it today is credited to Dame Cicely Saunders, an English nurse, social worker, and eventual physician who opened the first modern residential hospice center in London, England in 1967. Uncommon in her time, she based her care on honoring not just the physical needs of dying people, but also their emotional, social, and spiritual needs. She pioneered interdisciplinary care, whereby specialists from various disciplines worked together to best serve the needs of their patients. Dame Saunders set the standard for caring for the whole person at end-of-life, which forms the foundation of hospice today.
How does someone qualify for hospice?
To be eligible to receive hospice care, a person’s doctor—either an attending physician at the hospital or a person’s primary care provider—and the medical director of the hospice organization must certify that a person has six months or less to live, if their illness takes its natural course. The ill person or their legal decision-maker must also agree not to seek curative treatment for the terminal disease while receiving hospice care. Once a person signs up for hospice, their first 90-day benefit period begins. As long as they continue to qualify for hospice, which generally means their illness is progressing, they may receive an additional 90-day benefit period, followed by an unlimited amount of 60-day benefit periods, potentially extending beyond the doctors’ original six-month prognosis. It is not necessary to receive palliative care before seeking hospice care.
Can people graduate from hospice?
Yes! Sometimes people improve and discharge from hospice care! A hospice physician will assess each person during each benefit period to determine continued eligibility, based on illness progression. People on hospice care can also decide at any time to end hospice care and seek other treatment if goals of care change, or if hospice is not a good fit.
Who is on the hospice team?
The dying person and their loved ones are always at the center of the care team. The interdisciplinary teams of support people that Dame Saunders pioneered now include skilled nursing professionals, hospice aides, medical providers, case managers, social workers, chaplains, dieticians, massage therapists, music therapists, and vast volunteer networks. Pet therapy is available for people who want the comfort of animal presence; occupational and physical therapy is available to help keep people safe in their homes; and bereavement specialists are available to support families and friends through their grief for thirteen months after a loved one’s death. The teams are broad by design, covering any number of physical, emotional, social, and spiritual concerns.
Where do people receive hospice care?
Most people receive hospice care at home, wherever that may be, including nursing homes, assisted living facilities, and private residences. In these cases, the interdisciplinary team members visit people in their homes and work with them to create care plans that optimize what is most important to the dying person and their loved ones. The frequency of visits varies, depending on need, and may range from a couple times per week to a couple times per month. There are always hospice nurses on-call during evenings and weekends to answer questions and make short-notice visits when necessary.
In nursing homes and assisted living facilities, staff continue the day-to-day caregiving, guided by the hospice care plan. In private residences, where there is no formal staff, family members often play a significant caregiver role by helping with medication administration, meal prep, feeding assistance, personal hygiene maintenance, and toileting. Bathing is often done by hospice aides during their visits.
Dedicated residential hospice facilities also exist for people who have symptoms that can’t easily be managed at home, or who may not have a home where symptoms can safely be managed. These facilities have 24-hour nursing and support staff who specialize in providing care for dying people and their loved ones.
Most hospitals also have the ability to provide hospice care for short-term needs. The philosophy of care is the same, only the setting differs.
Who pays for hospice?
Medicare, Medicaid, and many private insurance companies cover the care provided by the interdisciplinary care team members, as well as the cost of many medications, durable medical equipment, wound care supplies, and other items determined to be necessary for end-of-life symptom management.
The cost of room and board is not covered by the hospice benefit. For people living at nursing homes or assisted living facilities, the original payment plan remains in place while people are on hospice.
Residential hospice facilities charge a daily rate for room and board, with the exception of Our Lady of Peace, in St. Paul, Minnesota, which is able to offer room and board at no cost, thanks to generous donors who cover the costs that insurance does not.
What does dying look like?
People will generally have decreased wakefulness and spend more time in bed or sleeping. They will eventually have less of an appetite and will take in less food and fluids. This is often difficult for loved ones to see, since we equate food with life and love, but it is a natural part of the dying process. Encouraging food while the body is shutting down may actually cause discomfort, since it is harder for the body to process food at that point. While a person is still interested in eating, they may need assistance eating, and the consistency of their food may need to change to something easier to swallow, as chewing becomes more difficult.
Most people become incontinent as their bodies weaken, meaning they will not be able to control when they go to the bathroom. If receiving hospice care at home, loved ones may need to be prepared to take on intimate caregiving roles like changing soiled briefs.
Delirium greets most people as they transition closer to end-of-life. It is a change in mental status that can be caused by numerous factors, including and not limited to urine and bowel retention, pain, medication side effects, and electrolyte imbalances in the body. It comes on suddenly and presents as confusion and disorientation. People may have a faraway gaze or reach up and out toward something only they can see. They may describe seeing loved ones who have passed or have other auditory or visual hallucinations. Agitation is commonly a part of delirium, when people seem restless, uncomfortable, not like themselves, and often talk about having somewhere to go.
Eventually most people stop talking and responding to stimuli. It is common for people to be in a coma-like state for their last days.
A coarse sound that happens when air passes over pooled saliva and secretions in the back of the throat, commonly called the “death rattle,” is present for most people approaching death. People are still able to breathe when this happens, and there is no evidence that it causes any discomfort for dying people. It can, however, be difficult for loved ones to hear.
Eventually, circulation changes as the heart weakens, and people may feel cool to the touch and look discolored. Respirations change and breathing may slow so that they are only taking a few breaths per minute, or it may speed up, well above their normal range. There may also be long pauses in between each breath. During the last hour, breathing may be very shallow, and breaths may look like a “fish out of water.” Finally, there is one last breath, not followed by another.
How does hospice care help with these symptoms?
Choosing hospice means letting an illness take its natural course, but it is not passive, nor synonymous with suffering. Dying does not always look pretty, but hospice workers have a broad toolkit of evidence-based treatments and interventions to avoid and alleviate discomfort and manage symptoms as effectively as possible.
If you are considering hospice for yourself or a loved one, give yourself grace. This is hard, and grief shows up in many ways. Be gentle with yourself. Ask for help when you need it and know that hospice provides a community of people who care, and who will walk the journey with you.
References:
Kate Carpenter, MSN, RN, PHN, has been a bedside nurse at Our Lady of Peace Hospice & Home Health Care since 2021. She earned her Master of Science in Nursing degree from St. Catherine University in St. Paul, Minnesota.