Hospice: Reaching the Finish Line with Comforting, Compassionate Care
When we each have learned that friends and family were ill, sometimes seriously, or if they passed away, we knew how to act. We might send a stack of magazines, a few books, lovely cards with handwritten notes, and in the case of death, a donation and food. We used to attend services when permissible before COVID-19 struck.
However, we’ve been stumped about what to do or how to react when a family member announces that someone is going into hospice, the path many take when there is no more that can be done medically and the road to death is imminent.
Death is not on a timetable and isn’t always immediate, though it can be. Sometimes, it’s a day or two or it can be months. And some have even gone in and out of hospice. Humor columnist Art Buchwald lived 11 months after he took himself off hospice.
What do you do to ease the pain of those dying or helping as family or friends? Do you call, visit, bring a humorous movie? Of course, so much depends on their pain level and desire to see others.
We each had some personal experience. Barbara reached out to her mother’s physician as she declined greatly to see if she were a candidate; she had heard such wonderful stories about the comfort it provided to patient and loved ones. Her mother wasn’t eligible.
Margaret’s mother received hospice, at the suggestion of her physician. A nurse came in every day to check her vitals and make her as comfortable as possible. Two days later, she died peacefully surrounded by her daughters and one grandson. After she passed, a hospice nurse called Margaret to make sure she was doing okay and to invite her to join a support group. When her husband went into hospice in the hospital four days before he died, hospice not only helped with funeral arrangements but followed up by offering support group services.
To learn more, we engaged Ben Marcantonio, MS, MEdd, LFMFT, Chief Operating Officer for the National Hospice and Palliative Care Organization (Leadership - National Hospice Foundation) based in Alexandria, Va., to ask how to do what’s right for a person in hospice. Do we surround and shower them with final hugs and love? Following is our edited and condensed interview with him.
Question: First, how would you define hospice care?
Answer: It’s a movement that first developed in England about 40 years ago regarding how people can spend their final days, weeks, months with more quality of life, physically, emotionally, and spiritually, if they have a terminal illness.
Q: How large is the movement?
A: There are now more than 4,000 hospices in this country that provide care, from small community-based providers and local individuals to large companies that combine home health and hospice care. However, only about 50 percent who are eligible redeem care. We are trying to improve those numbers. But it’s a hard message to get across when someone is dying. People can be uncomfortable facing their and their loved ones’ mortality.
Hospice is one part of the bigger palliative care umbrella for people living with a serious illness, and not necessarily at the end of their lives. Palliative care, per se, provides curative intervention such as relief from symptoms and stress, but it shares with hospice the concept of improving quality of life.
Q: What are the standards to qualify for hospice?
A: When the means to get well are exhausted and the person will not get better is a time that hospice care can step in. The choice is guided by a medical team, counselor, social worker, personal aide and others who come to the home or visit the person at home or in a senior living type situation.
Q: What are good questions to ask to find the right hospice provider?
A: How long has it been providing hospice care? Do you have a website to share? What is the breath of services you offer since they may differ greatly? How available are volunteers? Do you take a team approach?
Q: Is it covered by Medicare or other insurance?
A: Yes, Medicare offers a hospice benefit that covers all expenses related to the hospice team of professionals as well as needed equipment and medications related to the terminal illness. The hospice receives a daily rate from Medicare that covers all the services they provide a patient and family caregivers. Each hospice program must meet certain conditions or guidelines that Medicare sets. For example, nurses oversee care and visit but they’re one part of an interdisciplinary team.
Q: Is there a normal timetable for how long it lasts?
A: Yes, six months or less but an average of 70 days. It’s based on a physician’s call about the prognosis of the disease and its trajectories. Cancer is different from dementia. And there’s great leeway within what’s provided regarding care. It’s based on what the person or family wants their quality of life to look like.
Q: We thought there was no curative medical intervention allowed in hospice, is that true?
A: True, for hospice; care is all about providing comfort, except there is pain medicine administered and medications permitted for other illness that aren’t related to the terminal illness, perhaps, blood pressure, for example, or radiation to reduce a tumor. Once in hospice, there’s an effort to reduce medicines in general and that depends on a physician’s assessment. Hospice care empowers people to make good choices for their values and needs.
Q: Will care increase over time as the person declines?
A: Yes, and the team offers an ongoing assessment for more or less support. Sometimes, someone may have care every two weeks, then two to three times a week, sometimes with telephonic check-ins which has happened more due to COVID-19. Visits are all documented so everyone can read what is happening.
Q: This can be very stressful on family. What do you offer to them?
A: Bereavement services and care are a requirement. Team members ask and assess what each family needs for its support. We want hospice to offer a good experience for everyone.
Q: So many are concerned about the rising cost of healthcare. Is this an expensive option for the medical care system?
A: It’s been demonstrated from early on that it has helped reduce costs because it helps people avoid high-cost emergency room visits and other expensive options.
Q: And in the very end, what happens?
A: Every journey is unique.
Q: Back to our original question, what can we as bystanders do to help the person or family members?
A: Come out and ask, how can I help? Some may say we wish to be left alone; others will ask you to check in or drop by. Leave it open ended since it may change. Know that those involved in the movement are daughters, wives, husbands and are drawn into the field to help others live well and be comfortable. We don’t focus on the dying but helping those live their last days best and well.