There are few words that cause more fear, or are more misunderstood, than “hospice”. Mention the “h” word, and most people, including some doctors, have misconceptions about what hospice truly is.
Visiting Nurse and Community Health’s (VNCH) Hospice Care program, which opened in July 2009, has provided compassionate care and dignity for almost 300 end-of-life patients and their families. Many of our patients had little or no idea of what hospice actually entailed until they came under our care. The most common statement made by families who chose hospice for their loved one is “we wish we had known about hospice sooner.” This article is in response to their requests that we help others distinguish between the fact and fiction surrounding hospice.
Here are 10 of the most common myths about hospice care, and the truth about each.
1. Hospice is a place.
True and false. Hospice care is provided wherever the need exists – usually in the patient’s home. About 80% of hospice care takes place in the home, but services can also be delivered in a nursing home, assisted living facility, hospital, or a residential hospice facility.
2. Hospice is a death sentence.
False. Hospice patients live, on average, 29 days longer than non-hospice patients. This is because the patient is in a familiar environment – their home, the assisted living or skilled nursing facility in which they reside – and their symptoms are being managed. All of their needs are being met, not just the physical, but the psychosocial and spiritual as well. Those VNCH Hospice Care patients who had previously experienced numerous or long hospital stays during the course of their illness have told us that their desire to live actually increased after entering our program because they enjoyed a marked improvement in their quality of life.
Patients can remain in hospice longer than six months, and some patients even get better after starting hospice because of the intensity and focus of our services. These patients are no longer considered to be appropriate for hospice care.
3. Hospice is only for old people.
False. Although the majority of hospice patients are older, hospices serve patients of all ages.
4. Hospice is only for cancer patients.
False. Cancer victims make up only about half of hospice patients, according to recent statistics from the National Hospice and Palliative Care Organization (NHPCO). The remainder is comprised of end-of-life patients who have Congestive Heart Failure (CHF), Chronic Obstructive Pulmonary Disease (COPD), liver or kidney disease. Dementia and Alzheimer’s patients can also qualify for hospice once they reach the point where they are not walking and cannot hold a lucid conversation.
5. Hospice doesn’t involve the patient or family in making decisions about treatment.
False. Hospice puts patients and families at the center of care. VNCH’s Hospice Care staff members provide guidance and encourage open, honest communication about individual wishes and choices.
6. Hospice requires that family members are available to provide care.
False. Since a number of end-of-life patients live alone or with family members who are unable to provide care, VNCH’s Hospice Care staff often coordinates non-family resources to make home care possible. They can also help to find an alternative location where the patient can safely receive care.
7. Hospice patients starve to death.
False. Hospice encourages patients to eat for as long as they are willing and able. But patients may, at some point, refuse to eat or drink liquids. It’s not the hospice staff that stops the feeding, it’s a patient’s choice.
8. Hospice patients are taken off all medications.
False. Hospice provides medications related to the disease process and the patient’s comfort. These can include pain medication, anti-anxiety, anti-nausea and vomiting drugs. Another falsehood is that hospice gives the patient massive doses of IV morphine. Morphine can be used to control pain or shortness of breath along with other narcotic medications, but usually is given in pill or by patch applications.
9. Hospice is paid for by the patient.
False. Medicare covers the hospice benefit for those who qualify. Most hospice patients are over 65 and are entitled to the Medicare Hospice Benefit. This benefit covers virtually all hospice services related to the diagnosis, usually requires no out-of-pocket expenditures, and hospice care can be less expensive than other end-of-life care. Many insurances and managed care organizations also have hospice benefits, and VNCH’s Hospice Care staff will be happy to help you understand what payment sources are available.
The hospice benefit also covers medical equipment, appliances and supplies. These can include electric hospital beds, lifts, bedside toilets, shower chairs, wheelchairs, wound care supplies, etc. – whatever is considered necessary for the hospice symptom management in the home. Additionally, hospice includes physician services, nursing care, home health aide services, social work services, spiritual care, volunteer assistance, bereavement services, and physical therapy, occupational therapy and speech/language pathology services.
10. Hospice patients can no longer receive care from their primary care physician.
False. Hospice medical directors work with primary care physicians to manage the patient’s condition. VNCH’s Hospice Care medical director is available 24 hours a day for consultation, but the primary care physician actually follows the patient to ensure that his/her symptoms are managed, and they are getting the best quality of life possible.
Hopefully, we have provided useful information about hospice care. We cannot stress how important it is to learn about your healthcare options, so that you can make informed decisions and choices before you or your family needs care. Learn about what an advanced directive is, and how to implement it. Voice and be specific about your healthcare decisions, and engage others, most importantly family members, to learn about hospice.
VNCH Hospice Care focuses on how the patients entrusted to us live. Their dignity and quality of life, and that of their families, are always foremost in our minds. But when death is inevitable, hospice doesn’t abruptly go away. We provide bereavement counseling and support to family members for 13 months after their loved one’s passing. We also conduct bereavement support groups for residents in the 28 communities VNCH serves, including Acton, Arlington, Bedford, Belmont, Billerica, Burlington, Cambridge, Carlisle, Chelsea, Concord, Everett, Lexington, Lincoln, Malden, Medford, Melrose, Newton, Revere, Somerville, Stoneham, Wakefield, Waltham, Watertown, Wayland, Weston, Wilmington, Winchester, and Woburn.
Our Hospice Care program is also a We Honor Veterans partner. As such, we provide veteran-centric education for staff and volunteers, and identify and honor patients with military experience.
To learn more about VNCH and its Hospice Care program, visit the agency’s website at www.TheVisitingNurses.com, or call 781-643-6090.
Since its founding in 1898, VNCH, a 501(c)(3) non-profit, has had a deep rooted tradition of providing quality health, private pay and hospice care to patients in their homes. Awarded for its quality ranking in the top 25% of home care providers nationally, VNCH is committed to using modern, state-of-the art medical technology to help achieve its goals.
About the Author:
Christine Dixon has been Visiting Nurse and Community Health’s CEO since 2004. She joined VNCH in 1994 as Nurse Team Manager, and quickly rose through the ranks to be named Chief Operating Officer and Director of Clinical services in 1996. She received her diploma in Nursing from New England Baptist Hospital School of Nursing, a BSN from Regis College, and her Master’s degree in Health Care Management from Cambridge College. She serves on the Board of Directors of both the Visiting Nurses of New England and Massachusetts Bay Self Insurance.