Making Sure Hospice Is There When We Need It
Poppy Lee was a good man who was full of life. When he found out he had lung cancer, Lee decided against surgery, and after some months Lee got weaker and became more difficult to care for properly. Finally, he asked to go to a local hospice facility. This decision made it clear to his family that Lee was at the end stage of his life, and allowed him to talk about it with the people in his life whom he cared for most. His time in hospice gave his family the opportunity to say their goodbyes without pretending that he was going to get better. His daughter will never forget him saying in his gravelly voice and with a twinkle in his sea blue eyes, “Well Don, I’ve done everything I wanted to do.” And then they both smiled and said in unison, “Except live in Florida.” The farewell is forever treasured by Poppy’s daughter.
The end of life is always a surprise. If someone dies young, their death may be unexpected, or the end of an unwelcome disease. If someone dies in old age, by that time we have become used to their presence and never think their time will really end. Sometimes there are choices in the face of death, choices of treatment or not, of hospitals, nursing homes, hospice, or home care. If we are lucky, there is time to say goodbye, for the person who is dying and for friends and family. And, if we are lucky, the quality and dignity of life can be sustained until the end. Hospice plays a significant role in such difficult decisions.
Designed to provide comfort and support to patients during the last stages of life, hospice is a method of care for those expected to live six months or less. From this perspective, death is viewed as the final stage of life, and focuses on treating the person, rather than the patient or the disease. Hospice care fosters an attitude of acceptance of the end of life, with the goal of enhancing the quality of life.
Patient care is provided round the clock and can be offered in a variety of locations. Although, over 80% of care is provided in a home situation, hospice care also takes place in hospitals, nursing homes, and private hospice locations. Hospice and palliative care providers work with patients of all walks of life including those in prisons, mental health institutions, group homes for adults, and the homeless.
Included in hospice is palliative care, which is concerned with alleviating symptoms of disease and pain. Palliative care reduces suffering and increases the quality of life for all patients, not only those at the end of life. Services are provided by a health care team, which provides pain and symptom control, spiritual and counseling care, family counseling, and end of life planning.
Hospice care providers also offer family grief counseling for up to thirteen months after a patient dies. Alternative care can include music therapy, massage, aroma therapy, Reiki, art therapy, and pet therapy. Hospice care organizations also provide respite care designed to give family members time off. They run volunteer training, work with schools and community-based organizations to provide education about end-of-life options, and respond to timely referrals for those who might benefit from hospice care.
While care in a hospital, nursing home, or private hospice facility can be significantly more costly than hospice homecare, hospice still faces significant financial barriers. Despite its economic advantages over other healthcare options, currently only 85% of hospice services are reimbursed by Medicare. Additionally, Medicare requires that 5% of hospice patient care be provided by volunteers, which poses another difficult aspect of funding and instituting hospice care. Hospice care is not covered by all insurance companies and there is no direct federal funding for hospice care. Moreover, many hospice services such as grief and bereavement counseling are not funded at all.
According to Jon Radulovic, Vice President of Communications of the National Hospice and Palliative Care Organization, currently, “hospices are looking at a reduction in reimbursement rates that’s being phased in by the federal government.” Beth Mahar, Director of Member Services of the Hospice and Palliative Care Association of New York, expanded upon this point, stating that there is “a crisis right now in funding. Usually Congress designates hospice rates, but the current administration has taken a step to basically cut hospice rates through program regulation, rather than going through Congress. This takes affect on October 1, 2008. Right now, we’re trying to get Congress to pass a bill to counteract this measure, which would cut rates to hospice programs through regulation changes in CMM (Centers for Medicare & Medicaid Services).”
The recent jump in gas prices has also been squeezing the already tight budgets of hospice foundations and providers, which are overwhelmingly non-profit organizations and can operate on margins as low as 3%. Ms. Mahar is all too aware of the affect of gas prices on hospice care: “The government has increased the Medicare rate by only 1% recently, which certainly doesn’t even come close to touching the amount of money that they [our volunteers and employees] are spending on gasoline. Most hospice is provided in the home, so it is increasingly hard for caretakers to get around and provide the needed services.” Mr. Radulovic concurred noting that, “the gas issue is one that hospice organizations are affected by specifically not to mention the cost of supplies, durable goods, and medications. Everything is going up”
In the light of these financial challenges, how can donors best help hospice services in this time of increased need?
• Volunteer Options: Volunteering is a great way to quickly get involved, both locally and nationally, with hospice care. Because, “hospices are required to have community volunteers provide 5% of hospice hours,” says Mr. Radulovic, volunteers are especially important. For example, you could:
o Contribute specialty services such as massage therapy, music therapy, art therapy, or pet therapy to your local hospice program.
o Volunteer for a hospice program at a local hospital or nursing home.
• Strategic Giving Options: Donations on both local and national levels are key for the upkeep and growth of hospice and palliative care organizations that support hospice education and care. Some donation suggestions are to:
o Establish a fund through a local community organization to provide for hospice care for those without adequate personal resources.
o Work with your local community or faith-based organizations to identify and help an individual or family who lacks adequate funds for hospice care.
o Create a fund for the transportation of hospice workers to the hospice location.
• Community Discussion: There are many ways to engage your community in the hospice care discussion, helping to spread information, ideas, and build community fundamentals.
o “Write your congressional representatives to let them know you support hospice and would encourage them to support the benefit as we currently know it, and to prevent additional cuts to reimbursement rates,” suggests Jon Radulovic.
o Promote discussion and education about end-of-life care decisions and options through meetings at home, local schools, hospitals, or community-based organizations.
In 2007, hospice and palliative care played a significant role in the lives of these families, helping more than half of the 2.5 million Americans who died last year. During this time of economic struggle, it is now of even greater importance for donors to support hospices, institutions, and volunteers that are helping to make it a positive force in the lives of so many of our citizens.
For more information about Hospice and Palliative Care visit these organizations, or do an online search for “hospice care + your city:”
MedlinePlus - a service of the U.S. National Library of Medicine and the National Institutes of Health
Visiting Nurse Service of New York (VNSNY) matched student filmmakers with hospice patients in the VNSNY Living History Project: Independent Short Film Contest. To view some of the entries, including the winner, “The Shopkeeper’s Daughter,” visit: Independent Features
Written by: Donna DeSoto