End-of-life care is deeply personal and incredibly complex. An expert MD shares essential insights on hospice: "At its core, is about human connection."
“What I Wish I Knew About Hospice”: A Cleveland Clinic Palliative Care Physician’s Insights
Updated Sep. 03, 2024
According to 2020 data from the Centers for Disease Control and Prevention, approximately 1.5 million Americans rely on hospice care to find comfort and dignity in their final days, with the average hospice stay lasting 79 days.
Laura Hoeksema, MD, MPH, FAAHPM, medical director of Cleveland Clinic Hospice and staff physician in the department of palliative and supportive care, explains the importance of hospice: “Death is a part of life just as much as birth is. When time becomes limited, patients need to be able to spend time in a way that’s meaningful to them.” For some patients, this means focusing primarily on their comfort. For other patients, this means continuing to receive treatment for their disease, which may involve more frequent hospitalizations. “It’s important for patients to understand and explore their options so they can receive the type of care they most desire as they near the end of their lives,” she adds.
This personalized, compassionate approach is at the heart of hospice care. Ahead, Dr. Hoeksema and Nellie, a 62-year-old woman from Tampa, FL, who watched her father enter hospice after a lengthy battle with lung cancer, share insights about what they wish people knew more about hospice.
What is hospice?
“Hospice care is specialized care focused on comfort when a patient’s prognosis is measured in months rather than years. Patients can choose to receive hospice care when their prognosis is six months or less if their disease takes its normal course,” explains Dr. Hoeksema. This type of care is delivered by a team that includes physicians, nurses, social workers, chaplains, home health aides and dedicated volunteers who all rally around the patient and their family. Bereavement specialists also offer ongoing support to the family through the first year after a patient’s passing, ensuring they have the resources and support they need. Hospice also ensures that patients have access to necessary medical equipment, such as hospital beds, oxygen, medications and other medical supplies.
Rather than focusing solely on the illness, the hospice team dedicates their time and energy to caring for the whole person. This includes providing support for their loved ones and managing symptoms effectively. “Our hospice team spends time learning about what brings the patient joy and their hopes and fears. Our goal is to control symptoms so the patient can be fully present in their life and spend time in ways that are meaningful to them,” she elaborates.
Hospice care can be provided wherever a patient considers home, be it their own house, an assisted living facility, a skilled nursing facility or a designated hospice facility. The focus is on making each day count, ensuring comfort and maintaining dignity at every stage.
When is the right time to consider hospice?
“When patients start to decline, spending more time sleeping, eating less and having more frequent hospitalizations, it’s a good time to consider hospice,” Dr. Hoeksema explains. “When it starts to become burdensome for a patient to go to their medical appointments or when patients are told there’s no further treatment for their disease, meeting with a member of the hospice team to learn more about the support hospice can provide is advised.”
Dr. Hoeksema emphasizes that choosing hospice care is exactly that—a choice. The team offers additional support, guiding patients and their families through the last months of life. “Patients and their families find great comfort in having experienced guides to help navigate the transitions that occur as patients near the end of their lives. I often hear from families, ‘I wish we’d gotten hospice involved sooner,'” she shares. Exploring care options early ensures that your loved one can receive care that resonates with their personal values.
Nellie, who recently navigated this path with her father, shared, “Putting dad into hospice was one of the hardest decisions we’ve ever made, but seeing the compassion and care he received made us realize it was the right choice…It brought us some peace in those final months.”
Hospice doesn’t mean giving up
Many people mistakenly view hospice as a form of giving up. However, Dr. Hoeksema clarifies, “Hospice is about taking control of how, where and with whom patients spend their last weeks or months of life.” Hospice becomes a valuable option when continued treatment for a disease is no longer effective or becomes overly burdensome.
Nellie experienced a similar revelation. She initially struggled with the decision for her father, but her perspective shifted when she realized the extent of his discomfort. “I realized the treatment for the cancer was actually doing more harm than good. He didn’t want to spend all his time getting tests or attending appointments. He just wanted to be present with us.” Hospice provides a way to focus on quality of life and cherished moments with loved ones rather than on the disease itself.
It’s also essential to know that choosing hospice care isn’t a final decision. Patients have the flexibility to leave hospice if their circumstances change.
Hospice isn’t only for patients in the last few days of life
A common misconception is that hospice is only meant for the final days of a patient’s life. However, patients and families benefit significantly when hospice care extends over weeks or months. This misunderstanding initially made Nellie reluctant to engage with hospice services. “I just wasn’t ready to say goodbye to dad just yet,” she recalls, “but the hospice nurse assured me that the care could extend for a much longer period.”
Dr. Hoeksema explains, “This allows patients and their loved ones to get to know their care team and receive ongoing symptom management, emotional and spiritual support and education about the dying process.”
Hospice doesn’t quicken death
Another misunderstanding about hospice is that it either speeds up death or prolongs life, but this is not the case, according to Dr. Hoeksema. Hospice is fundamentally about providing comfort and dignity to patients as they approach life’s end, enabling them to spend their remaining time in meaningful ways. “The hospice team will use the least amount of medication needed to control the patient’s symptoms so the patient can live life fully.”
What are the costs involved in hospice?
The financial aspects of hospice care can be complex, but understanding the coverage can provide some relief. According to the Centers for Medicare and Medicaid Services, hospice care is covered by Medicare, Medicaid and most private insurance plans, provided it’s related to a patient’s prognosis of six months or less. Dr. Hoeksema clarifies some specifics: “If a patient receives hospice care in a facility, there is a room and board charge. If a patient hires caregivers to provide care in their home, hospice does not cover this.”
Hospice maintains dignity and respect for patients
“When a patient has a serious illness, it’s common for their illness to become the primary focus,” reflects Dr. Hoeksema. The constant anticipation of how the disease might progress can create overwhelming anxiety. With hospice, the illness recedes into the background, allowing the emphasis to be on caring for the person as a whole.
“Hospice gives patients more control over decisions related to their care,” she notes. Hospice teams are dedicated to personalizing their approach to each individual, ensuring that both patients and their families receive the support they need. Nellie witnessed this shift. She saw a remarkable change not just in her father’s demeanor but in her own, too. As one of his primary caregivers, living closest to him, she felt the weight of responsibility. However, from the very first visit, their home health aide, Joan, provided exceptional care and took care of every detail. “For the first time in a long time, I could simply enjoy being with him,” Nellie shares.
“The most profound healing I’ve witnessed as a physician has been in patients receiving hospice care,” Dr. Hoeksema adds. She recalls seeing families reconcile after years of tension and others coming together after long periods of distance. The joy on a patient’s face when surrounded by loved ones, laughing and reminiscing, is what it’s all about. “Hospice care, at its core, is about human connection.”
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Originally Published: September 03, 2024
