Say the word “hospice,” and most people cringe. It’s a word that signifies death in an American culture that’s fixated on youth.
But that’s not the purpose of hospice care: It’s focused on life, with the goal of making a patient’s remaining days as comfortable, positive and high-quality as possible, and ideally allowing them to remain in their own home until they pass away. One of the biggest surprises for many people is learning that patients typically improve under hospice care, extending their life by several months or even longer, said Jennifer Cary, RN and Executive Director of Kindful Hospice in Norman.
The number one frustration for hospice care providers is that so many patients could benefit from services months before they actually get them.
“There are a number of reasons why admission to hospice care is delayed, but once in place the number one reaction from families is almost always ‘I wish we had done this sooner; I can’t believe how much of a relief and how much better he’s doing,’” Cary said.
The primary reason families delay hospice until someone is on the verge of death is because the focus of the American medical system -- from physicians to patients to families -- is geared toward providing aggressive treatment for as long as possible. The focus is almost entirely upon the length of life, rather than the quality. There comes a point, however, when a cure is not possible and treatments are no longer effective, merely causing more pain, anxiety and financial hardship, Cary said.
Patients become eligible for hospice when they’ve been diagnosed with a terminal illness and aren’t expected to live longer than six months. They are people who’ve decided they no longer want to endure grueling treatments like chemotherapy, radiation and surgery, or they’ve reached the stage that available treatments are no longer effective. It’s at that point that the patient’s primary doctor makes a referral to start hospice care.
For these patients it’s not about giving up, it’s about taking control, Cary said. They are the ones making the determination on how they want to spend their final days. If the patient and family are in conflict, hospice providers adhere to what the patient wants. If the patient is unable to say what he or she wants, then family members - usually a spouse or a child - will step in. If a patient is over age 65, Medicare will cover 100% of the hospice costs. Most private health insurance policies also offer a hospice benefit.
A pervading myth is that hospice care is only for cancer patients, Cary said. However, a majority of today’s hospice patients suffer from chronic heart failure, chronic obstructive pulmonary disease (COPD) and end-stage kidney disease, often complicated by diabetes, hepatitis C, stroke and other issues. Patients with Parkinson’s disease, Alzheimer’s and other types of dementia also make up a huge percentage of hospice clientele. There’s also a significant trend toward middle-aged patients, rather than just the elderly, Cary said.
Each hospice patient and their family are attended by a team of providers, starting with doctors and nurses who have specialized experience and training in pain management and end-of-life care. They’re assisted by home health aides, who provide personal care like bathing, dressing and grooming; dietitians who supervise nutrition; and a support staff that includes social workers, chaplains, bereavement counselors and volunteers.
Social workers play a huge and two-pronged role, providing both emotional and practical support, said Linn Potter, LCSW, social worker with Kindful. They meet with patients and families regularly, helping them to navigate the intense emotional journey they’re all experiencing. Hospice social workers also provide practical assistance with finances, housing arrangements, funeral planning and critical documents like do-not-resuscitate orders (which are not a requirement for receiving hospice care).
Chaplains obviously provide spiritual support, but it’s tailored to the patient’s specific beliefs and is never pushed on anyone who doesn’t want it. The chaplains aren’t there to judge the patient’s beliefs (or lack of belief), but to provide comfort and support in whatever way is desired.
The presence of follow-up bereavement support after the patient’s death often comes as a surprise. As with chaplain services, they’re offered only if, and for as long as, the family wishes.
Volunteers, meanwhile, play a unique role. They’re there simply to brighten the patient’s day, providing a special type of companionship that isn’t laced with all the intense emotions (whether good or bad), between the patient and family members. In private homes, volunteers also provide respite care, sitting with a patient so caregivers can take much-needed breaks.
In addition to the core hospice team, patients can also benefit from specialized experts, most of whom volunteer their services. Art therapists, pet therapists and massage therapists, for example, each provide unique benefits.
Above all, hospice is about caring and comfort for the people who need it most. Mary Bess Gamel knows this very well - her brother, sister and niece all received hospice services.
“Hospice people are wonderful,” she said. “Everybody was so kind to us. The thing I was impressed by is that they were available whenever they’re needed, at a moment’s notice, and they really care.
“Some people are scared by the word ‘hospice,’” she added. “But once they understand, they realize it’s there to make it easier on the patient, it’s there to make them comfortable, and it also makes it easier for the family. For us it took such a weight off of me; toward the end I knew that if I couldn’t be there all the time, I knew there would be someone with them who cared.”