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Leah Eskenazi, Family Caregiver Alliance
Leah Eskenazi, Family Caregiver Alliance
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Bettina’s dad Paul (89 years), a once robust and active man, was getting weaker every day due to heart failure. They met with a surgeon to consider his options but the proposed medical intervention was fraught with complications and no guarantee of being able to return him to his one passion: square dancing. He opted instead to continue taking medications to treat the problem and ponder how he could hide his increasing weakness so as not to be a burden to Bettina. Recently, a friend asked if she had considered looking into hospice. Bettina was taken aback. She always thought that hospice was just for people who were terminally ill …
Promoting independence and “successful aging” is a laudable goal for many and a common media headline. But it’s not the reality for people caring for anyone diagnosed with a terminal illness or a relative who struggles to manage day to day as a result of debilitating health conditions and growing frailty. Most people would prefer to talk about wellness rather than illness, so we tend to avoid planning for advanced illness and ultimately death. One valuable, often overlooked, and generous Medicare benefit for those caring for a family member or friend is hospice care.
Adult children tell me that if they bring up the subject of end-of-life planning, their parent will think they want to “push them aside” or “be done with them.” Spouses have told me that they worry that even thinking about it will somehow hasten death or cause their partner to die sooner. The reality is, given the right opportunity, those living with illness and frailty often welcome the opportunity to share their preferences about their end-of-life choices. Listening without judgment to the individual’s worries or advice can be a gift to them. Researching what is available to help care for a family member living with advanced illness relieves the individual from having to do the work themselves.
Since 1983, Medicare has paid for most hospice care received in the United States. Other payers of hospice care include Medicaid (in most states), the Department of Veterans Affairs and most private insurance plans. Typically, no one is turned away from receiving hospice. Private contributions and donations are used to help cover the cost of care for those who have no other ways to pay for this service.
Beneficiaries are eligible for hospice care when they are entitled to Medicare Part A and are certified by a physician as having a life expectancy of six months or less if the illness runs its normal course. However, living longer than six months doesn’t mean the patient loses the benefit. After the initial certification period, each beneficiary receives an unlimited number of additional 60-day periods.
A good example of this was my friend’s mother, who lived in an assisted living residence. At an advanced age and consumed by Alzheimer’s disease, she “graduated” not once but twice from hospice. Both times she was diagnosed with pneumonia, kept comfortable but without aggressive treatment to cure her. Both times she appeared to be at “death’s door” but rallied to wellness. Throughout the experience, the hospice team oversaw her mother’s care while keeping the family well-informed and supported.
Although cancer patients used to make up the vast majority of hospice recipients, that is no long the case. An increasing number of people diagnosed with late-stage Alzheimer’s disease, non-Alzheimer’s dementia, heart disease, stroke, Parkinson’s and other conditions benefit from hospice. More hospice eligibility criteria can be found here.
People often wait too long before seeking hospice care. In the United States, the average length of hospice care is less than 60 days with 30 percent of those who elect hospice care dying in seven days or fewer. It seems that misinformation about the benefit coupled with our general discomfort talking about end of life prevents Medicare beneficiaries and their family from taking advantage of the valuable benefit.
An interdisciplinary team of health and social service professionals joined by volunteers work together to provide the following:
Those receiving care are allowed to keep their regular physician or nurse practitioner to oversee their care or to receive care from the doctor associated with the hospice organization.
Hospice is offered by both for-profit and not-for-profit organizations and can take place:
If you think you or a friend or relative may be using hospice services in the near future and you are fortunate enough to have more than one hospice provider in your community, it’s a good idea to contact or visit two or three. You will want to look for an organization that most closely matches your preferences. Although the core services provided by every hospice are essentially the same, each organization will have its own character, driven by their business model and organizational values.
Typically, hospice care starts as soon as a formal request or a ‘referral’ is made by the patient’s doctor. Some questions to ask a potential hospice provider:
An excellent list of questions to select from is offered by the American Cancer Society.
An important part of taking care of yourself is taking breaks. Your hospice team will offer to have volunteers come and sit with the patient or help with chores to make things easier for you. They are there to assist your family member or friend — and you — so be sure to tell them how they can help.
Hospice will be there to provide comfort and support following your loved one’s death. Bereavement services are offered to caregivers and families for at least one year. These services can take a variety of forms, including telephone calls, visits, support groups and written materials about grief.
For residential hospice, take note that the Medicare hospice benefit does not cover room and board in an assisted care facility (nursing home, hospice center), but will pay for care related to the terminal illness. However, there must be a contract between Medicare and the hospice providing the care.
Included in the Affordable Care Act (2010) is a pilot project called the Medicare Care Choices Model. According to the Centers for Medicare and Medicaid Services (CMS), in 2015 a select group of hospice providers will offer a new option. Medicare beneficiaries will receive palliative care services while concurrently receiving services provided by their regular physician and health care team.
Palliative care, if you are unfamiliar with the term, is a method of care that, like hospice, focuses on comfort of the patient and support and education for the caregiver. But palliative care can begin when a diagnosis is given and while treatments are being evaluated and selected. By comparison, hospice care traditionally begins after active treatment of a condition has stopped and the patient is not expected to survive the illness for longer than six months.
According to CMS, the goal of the two-year demonstration project, Medical Care Choices, is to see “whether Medicare beneficiaries who qualify for coverage under the Medicare hospice benefit would elect to receive the palliative and supportive care typically provided by a hospice if they could continue to seek services from their curative care providers.”
Anticipated announcement for at least 30 rural and urban hospices selected to offer the Medical Care Choices benefit is slated to occur early this year (2015).
Pursuing the Medicare benefit and accepting help from hospice can feel like a major change in how the person receiving care and their family considers the remaining time they have together. Caring for someone with serious illness and at the end of life is a daunting task, both mentally and physically. Having a dedicated, skilled and caring team of professionals to help can allow you to focus more on quality time with the person and less on the care and maintenance of the disease. Accepting help can make a difference in everyone’s well-being.
In a future column, we will address more issues facing those caring for a parent, spouse or other important person living with advanced illness.
MedlinePlus: U.S. National Library of Medicine – National Institutes of Health
National Hospice and Palliative Care Organization
Center for Medicare Advocacy
Family Caregiver Alliance fact sheet: End of Life Decision Making
More Helpful Publications from Family Caregiver Alliance:
Family Caregiver Alliance
National Center on Caregiving
785 Market Street, Suite 750
San Francisco, CA 94103
Family Caregiver Alliance (FCA) offers an extensive online library of free educational materials for caregivers. The publications, webinars and videos offer families the kind of straightforward, practical help they need as they care for relatives with chronic or disabling health conditions.
Family Care Navigator is FCA’s online directory of resources for caregivers in all 50 states. It includes information on government health and disability programs, legal resources, disease-specific organizations and more.
Leah Eskenazi, MSW, is Director of Planning and Operations for Family Caregiver Alliance, based in San Francisco, Calif.
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