Q. I recently read an article about Valerie Harper, an actress from the “Mary Tyler Moore Show” and “Rhoda,” who is dying of cancer. Her husband of 40 years, Tony Cacciotti, announced that doctors have recommended hospice care, which is typically offered at end of life, but he declined to take doctor’s advice. He wants her to stay with him because according to Cacciotti, “it’s hard to let go.”
If Ms. Harper received hospice care, wouldn’t she still be with her husband until the end? Can you tell me more about how hospice care works and who pays for it? I read somewhere that it is covered completely by Medicare and somewhere else that in some instances, it can be free. I also read that although it’s offered, in-home hospice might not be the best choice. Thanks so much for clarifying!
A. You are correct in that although doctors are telling Valerie Harper’s husband to consider hospice care, he is refusing. According to Cacciotti, “(s)o as long as I’m able and capable, I’ll be where I belong right beside her.”
What Cacciotti may not understand and what is often confusing for some is that hospice care, whether provided in the home or in a nursing home or in a dedicated hospice facility, is not abandonment. Rather it’s an acknowledgment, determined by a doctor, that the end is near and that treatments to forestall it will not work or will impair the quality of the patient’s remaining days.
Hospice is about providing dying people — those who a doctor thinks will live less than six months — comfort and services to make the transition to death easier and less painful.
This is not the first time that Cacciotti disagreed with a doctor’s recommendation for hospice care for his wife. In 2013, Harper was given three months to live after she was diagnosed with leptomeningeal carcinomatosis, a condition that occurs when cancer cells spread into the fluid-filled membrane surrounding the brain, known as the meninges. But the 79-year-old actress defied the odds and is still here five years later. She even participated in the reality competition show, “Dancing with the Stars” in 2014.
Why Choose Hospice
Hospice care often involves nursing care and assistance in relieving pain. It isn’t about sending someone away to die alone. Most hospice care is provided at home, but hospice in a nursing home or in a dedicated hospice facility (there are not many of these around the country) is sometimes preferable, as I will explain later in this article. Regardless of where the hospice care is being provided, the spouse, partner, and family members do not “go away” in hospice. And, if the prognosis changes or if a patient changes his or her mind about hospice, curative treatments can be resumed.
Hospice may be the right option for:
• situations where death is imminent within six months;
• treating end-of-life symptoms such as pain and shortness of breath;
• providing support for a patient and his or her family;
• helping someone through the ultimate transition.
Who Pays for Hospice Care?
Many Medicare beneficiaries are unaware that Medicare’s all-inclusive Hospice Benefit is available to assist dying patients and their families with issues at the end-of-life. For patients who qualify, Medicare will pay for comprehensive end-of-life hospice care delivered at home, in a hospice facility, or in a nursing home (the cost of the nursing home is not covered by Medicare, but hospice care is, for those who qualify). The Medicare hospice benefit includes many services not generally covered by regular Medicare, including any care that is reasonable and necessary for easing the course of a terminal illness such as:
• physician and nurse practitioner services;
• limited nursing care;
• medical appliances and supplies;
• drugs for symptom management and pain relief;
• short-term inpatient and respite care;
• limited homemaker and home health aide services;
• counseling;
• social work service;
• spiritual care;
• bereavement services;
• physical, occupational and speech therapy, and even chemotherapy, may be covered if they are for comfort, not cure;
• medication related to the terminal illness, which is covered at no more than a $5 copay.
Services are considered appropriate if they are aimed at improving the patient’s quality of life and making him or her more comfortable. To be eligible for Medicare’s hospice benefit, a beneficiary must be entitled to Medicare Part A and be certified by a physician to have a life expectancy of six months or less if the illness runs its expected course. But 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. People can live for years on the hospice benefit as long as their physician still believes that they have a life expectancy of six months or less.
In addition, the patient must sign a statement electing the hospice benefit. By doing so, he or she is foregoing treatment to cure his or her illness and electing to receive only care to make his or her last days more comfortable, called “palliative” care. This is a big step for many patients and their families. The patient must make this election, provided he or she has capacity.
To find a hospice in your area, visit the Web site of the National Hospice and Palliative Care Organization (www.nhpco.org), which offers a “Find a Hospice Program” tool.
To download Medicare’s booklet on the hospice benefit in PDF format, click on: http://www.medicare.gov/Publications/Pubs/pdf/02154.pdf.
Is Hospice Ever Free?
As mentioned previously, hospice is covered by Medicare, if a patient qualifies. However, some hospices in some states can begin delivering services much earlier. In a rural part of Washington State, hospice care is being run by volunteers and is being offered for free. This has been happening for 40 years, and the volunteer hospice in that state has been refusing federal funds the whole time! They rely instead on mostly volunteer staff and community donations to keep the hospice going.
The Volunteer Hospice of Clallam County in Port Angeles, Washington, was founded by Rose Crumb, who helped her father die at home, and called it “the most meaningful experience in her nursing career.”
In a nation where Medicare pays nearly $16 billion a year for hospice care, and nearly two-thirds of providers are for-profit businesses, the tiny volunteer hospice is not typical. Most of the nation’s 4,000-plus hospices receive Medicare payments for their services. There are only a few volunteer hospices like Crumb’s in the U.S. Although, for people who are not insured, or who may not have full coverage for hospice services, some hospice organizations may offer care at no cost or at a reduced rate based on your ability to pay. They can often do this because of donations, grants, or other sources, especially if the hospice organization is organized as a not-for-profit entity.
Patients at the Volunteer Hospice of Clallam County don’t have to meet Medicare’s criteria of having six months or less to live to be enrolled, though most do. They can keep their own doctors instead of turning over care to a hospice physician. If families need medical equipment, the hospice supplies it for free.
Rose Crumb at nearly 92, now suffers from osteoporosis, congestive heart failure and other ailments that plagued her patients in earlier years. But she’s not worried about her final days. “I’m all signed up for hospice,” she said. “and all my documents are in order.”
If You Do Choose Hospice — Nursing Home Hospice Care may be a Better Option than Home Hospice Care
Do you have a loved one who may need hospice care? As you can see, hospice care has advantages, depending on the needs and wishes of your loved one. Unfortunately, in-home hospice has disadvantages, as well, as we covered in a previous article. Many hospice providers are failing to provide quality care for patients at end of life, especially when that care happens at home.
If hospice care is right for your loved one, it can be rendered in a nursing home setting, and this might be the preferred place based on the findings in the article in Kaiser Health News, ‘No One Is Coming’: Hospice Patients Abandoned At Death’s Door.’ Please read more in my article, “The Ugly Side of Hospice.”
Unlike with hospice care provided at home, nursing homes are staffed with nurses and doctors 24/7, making them (in many cases) a better choice for a loved one’s long-term care needs and end-of-life needs, and hospice care can just as easily be provided in the nursing home as it can at home. Many nursing homes have a contract with one specific hospice provider, so if you have a loved one in a nursing home, you might not have a choice in picking a hospice provider. However, you know that if you’re in a nursing home, you’re not going to be left without care at end-of-life even if the hospice provider fails to show up. Receiving hospice care at a dedicated hospice facility can also be a very good choice; the problem is that there are very few dedicated hospice facilities around the country.
Protect your family’s hard-earned money and assets from the catastrophic costs of nursing home care
The best time to create your long-term care strategy is before you actually need long-term care. If you’re over 65, we recommend that you begin your asset protection planning now. Even if you are currently receiving long-term care services for yourself or a loved one, it’s still not too late to plan and protect assets and improve dignity and quality of life; please call us to make an appointment for an initial consultation:
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About Evan H Farr, CELA, CAP
