Major decisions don’t come easily. They may involve a good amount of soul searching to get to the point where you feel content about the course you’ll take. For many people, choosing whether or not to stop curative treatments and transition to receiving hospice care is one of those times.
Understanding hospice and the benefits it provides before you or a loved are appropriate for this specialized end-of-life care may help ease the difficulty of that decision.
Hospice, which became a Medicare benefit in the early 1980s, is a philosophy of care that focuses on comforting and supporting patients and their families so they can center on what is truly important: quality of life and their time together. It is a holistic approach to supporting an individual’s physical, emotional and spiritual needs.
As experts in serious illness and end-of-life care, Housecall Providers is committed to educating our communities near and far on what good hospice care looks like, encouraging families to have conversations about death and end-of-life care before a health event takes place. In doing so, people learn about available services and can communicate with loved ones about what is most important to them at end of life.
Perhaps no one in recent memory has helped to shed light on the benefits of hospice care more than former President Jimmy Carter, who, by being on hospice since February, is helping to dispel the belief that hospice means a person is giving up and not getting care. Nothing could be further from the truth.
Hospice means shifting the focus to what is most important and directing care to meet the unique needs of each patient. Although it was designed for those with a life expectancy of six months or less (should the illness runs its natural course), the average length of stay is nearly 90 days with people living longer or shorter depending on their disease progression.
A patient on hospice has a team comprised of individuals who specialize in serious illness care. They work with the patient and family to create a personalized care plan. Doctors, nurses, certified nursing assistants, social workers, spiritual counselors and sometimes volunteers work in unison to ensure that patients and families have the support they need.
Too often referrals for hospice care are not made until the patient has uncontrolled symptoms or is near death. At that point, hospice can still do much to provide care and assist patients and loved ones. But patients who are able to be enrolled in hospice for at least two or three months benefit by developing deep relationships with their hospice team and focusing on quality of life.
“If there is one thing that our clinical teams hear time and time again it is that our patients and families wished that they had come on hospice sooner,” said Housecall Providers Hospice Director Richard Holman. “Oftentimes the understanding of hospice services is contradictory to the experience patients and families have. When they realize the level of support available from more than five different disciplines and that the team members are committed to making sure symptoms are controlled and that the patient’s wishes are fulfilled, a new understanding develops.”
One Housecall Providers Hospice patient, Lee Zuanich, understands that very well. Lee, 97, was getting to the point with her disease progression that her son, John, brought up the idea of hospice to his mother but she was adamantly against it.
“I said that hospice spells death, and I didn’t want to go on it,” Lee said. “But he talked to me and told me the things that they do, and I thought ‘oh it doesn’t sound too bad.’ So I came on, and I’ve been most happy, most happy.”
Now, after more than four months on hospice, Lee gets checked on nightly by her son and daughter, Debora. And she also gets visits regularly from her care team members, Laura Hansen (nurse), Fran Kincaid (social worker) and Sam Aylor (spiritual counselor).
“Every one of them, they have been so wonderful to me. I can’t say enough about them,” said Lee. “You have to be on hospice to understand, because you couldn’t believe the kindness and what they stand for. They all care about you; even though you’re a complete stranger, they care about you.”
Getting visited by Sam has been especially beneficial in helping Lee accept the new hospice reality. “He is a doll and is the only kind of religious person that I have ever really cared for,” said Lee. “He’s been so kind and not pushing any religion or telling me I should believe this way or that way. He listens, and that’s it.”
Lee is a definite believer in hospice care now. And she has a message for those who may be putting it off for some of the same reasons that she did initially. “I would tell them that if we’ve lived, then we are going to die. But hospice, they make it easy,” she said. “It is nothing to be frightened of. They put you at ease.”