IT’S OKAY IF YOU’RE NOT READY FOR HOSPICE. It’s also okay to learn about it.
At its best, hospice is not a place, but a way of seeing and valuing life that supports and champions a self-directed end. The heart of hospice embodies compassion and acceptance. It’s designed to acknowledge and support all aspects of being human: our physical, emotional, mental, and spiritual selves. This is holistic medicine at its best.
When we think about reaching the end of life, eight out of ten of us say we’d prefer to die at home surrounded by loved ones. Unfortunately, it hasn’t been working out that way. Currently, seventy percent of us are dying in hospitals and nursing homes under difficult circumstances. That’s quite a gap. Why such a discrepancy? Can we have a say in how we die, or at least some control over our environment? Hospice strives to be part of the solution.
By realizing the likelihood that we may not die in a place of our choosing, we each have a pivotal opportunity to look ahead, learn more, and to plan accordingly. Becoming familiar with hospice is an important step.
“Hospice is for When I’m Dying, Right?”
“Yes,” hospice is specialized care for the end of life. And “No,” hospice can also be appropriate months prior to death, and emphasizes living fully for as long as possible. While many of us have had personal experience with hospice, for those who haven’t, here’s a brief introduction.
Hospice is about reclaiming the end of life as a natural and poignant chapter instead of a continuing medical battle. For nearly 50 years, hospice specialists have been working to transform our medical system’s ability to provide care when a cure is no longer possible. The transition from cure to comfort is hospice’s calling card. Ideally, hospice gives a patient time to prepare, and then to rally the loving support of family, friends, and a dedicated care team.
The U.S. hospice movement began as a bold experiment in Branford, CT, in 1975. That first year, seventy-five Americans benefitted from this “new” compassionate approach. In 2020, in a broad range of settings in all fifty states, more than 1.6 million people received hospice care provided by over 5500 separate agencies. Just over half of all deaths in the U.S. now occur under hospice care, which is available at home, and in most hospitals and assisted living facilities.
“How does it work?”
The Hospice Benefit, passed in 1982, offers every American at least 180 days of care, fully paid for by Medicare. For years the national median length of stay has ranged from sixteen to twenty-two days. Again, why such a gap? Essentially, it’s hard to accept that life has run its course. Due to this, hospice is usually called in late, and able to only offer a small portion of its full value. The good news: Learning about hospice and what it has to offer can happen right now.
A safe start is to talk about it, and to keep asking questions. When it’s time, a referral to hospice is usually initiated by your doctor, nurse, or social worker. A representative from your local hospice will normally follow up within twenty-four hours.
While generally available in all health care settings, homecare is hospice’s claim to fame. In a home setting, the explicit intent is for the patient’s family and support community to take care of the patient under the hospice team’s guidance. Hospice team members will stop in frequently but usually for an hour or so at a time.
If you’re set on dying at home, hospice will coordinate the care, but plan on getting all the help you can from family, friends, and neighbors.
“I’ve Heard People Say They Were Disappointed in Hospice”
Be sure to ask your hospice agency for detailed information about what’s provided and what isn’t. When patients are dissatisfied with hospice, it often has to do with unrealistic or inaccurate expectations.
Another source of disappointment: Many folks wait long into their illness to learn about hospice and to accept what it has to offer. Nearly 30% of hospice patients are referred in their last week of life, severely limiting the benefit to both patient and family.
One explanation is that Medicare normally requires a patient to discontinue life-prolonging treatments such as chemotherapy, radiation, ICU admission, surgery, and feeding tubes. This disincentive can lead to undue suffering, given that these treatments may no longer be of benefit, and may even be undermining one’s quality of life.
Be clear at the outset what your hospice agency is offering. Then be firm about getting what you’ve been promised. Hospice isn’t perfect, but it’s the gold standard for end-of-life care.
Getting Ready to Die Can Be Hard Work
Even with forethought and planning, to finally accept that life is coming to an end is difficult. There’s no easy out. It takes time. That said, the path to acceptance is marked by conversation with our loved ones and medical team.
Most hospice and palliative care workers are skilled at helping patients express their hopes and fears. Together, you and the hospice team can explore various care options that may be well-aligned with your values and preferences.
Learning what hospice has to offer and saying “yes” to its model of care is not likely to shorten your life. Extensive research and supporting data show just the opposite. The acceptance of hospice care not only leads to less suffering and more comfort, but longer life. It’s counter intuitive, but a fact.
Whether at home, the hospital or in assisted living; personalized, attentive care focused on quality of life is good medicine.
Pain Management is an Art and a Science
No matter the setting, unmanaged pain and agitation are the most common obstacles to a peaceful death. Hospice Care is nationally recognized for skillful pain management.
Morphine, when prescribed and administered by a hospice nurse, can be a godsend. It is commonly used at end-of-life to quell pain and to relieve shortness of breath.
Patients and family members sometimes worry that morphine will speed up the dying process. There’s no evidence to support this concern; in fact, the relief patients receive from morphine may allow then to live slightly longer.
When a patient is receiving morphine in the final hours, there will always be a final dose prior to death. It’s not surprising for a family member to wonder if that dose was the cause of death. Not likely. It was just the last medication given prior to death’s arrival.
The Value of Peace & Quiet
When it comes to the end of life, peace and quiet are important contributors to an acceptable death. Dying at home, where you and your family have some say, tends to be a quieter and more personal experience. That said, when a higher level of care is required, hospitals and assisted living facilities are working harder to accommodate patient and family needs, even amidst the normal commotion of a busy facility.
Hospice has shown me time and again that with skillful pain management and attentive caregiving, dying can be acceptable, even peaceful. Ideally, hospice gives a patient time to decide and convey what a “good death” might look like, and then to rally the loving support of family, friends, and a dedicated care team.
Next Week’s Post: My Dad’s Final Wish; To Die at Home
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‘Safe Journeys, until next week –
DSW