Hospice care does not mean the end

Unless they’ve had some experience with it, hospice care is still a mystery to most people.  Because hospice deals with death, people tend not to discuss it.—Art Buchwald, American humorist in The Washington Post.

 When my mother died last October at age 90, it was from heart issues that began “out of the clear blue sky” as far as we were concerned.  In the hospital, mom was placed in the palliative care floor, and passed away so soon that Hospice scarcely had time to join us in our grief.

            That experience caused me, among other things, to realize how widespread misunderstandings about Hospice remain.  People do not seem to understand what the organization really is, nor where it provides services, nor what kind of services are provided – and how Hospice is paid for its services. 

            Hospice is not a certain place, for hospice care can be delivered in many places.  It is more a philosophy of care that focuses on quality of life for a patient and his entire family.  Hospice is usually called upon when a patient’s illness has progressed to the point that a cure is no longer possible, and the patient and his Doctor have chosen comfort over curative care.  This care can be provided wherever the patient calls home – whether it is a residence, assisted living facility, long-term care facility, or other domicile.

            Some people feel strongly that calling for Hospice help is an absolute death sentence, when there is no hope or when “nothing else can be done.”  Actually, hospice is the “something else” that can be done for patients and their families.  It is not an end to treatment- it is a shift to comfort-oriented care that centers on helping a patient live his or her life to the fullest.  In addition to managing pain and other symptoms, hospice provides counseling and social service support to address the emotional and spiritual aspects of coping with advance illness.  This support is available not only for the patient, but for the patient’s family and loved ones.

            It is interesting to me, as a person providing support in all areas of aging, that so often the word Hospice feels like a death sentence.  It is my belief that the main reason for that is that patients are not referred to hospice by their physicians until the last minute or until there is really nothing else that can be done.  They are referring a patient to Hospice that will pass away very soon no matter what care is provided.  Hospice neither hastens nor prevents death. 

            Humorist Art Buchwald is a stunning example of a patient who lived longer than expected after hospice came into his life.  Mr. Buchwald described himself as the “man who would not die.”  In the months between his extended hospice stay and his eventual death from kidney failure, he was a literate and emphatic example of the benefits of hospice care.

            “Hospice gives a person the opportunity to die with dignity,” wrote Buchwald.  “It provides care, help and as much comfort as possible.  When the patient enters hospice, an entire team sets to work to meet the family’s needs – a doctor, a team of nurses, a case manager, a social worker, a chaplain, a nursing assistant, a bereavement coordinator and of course the volunteers who read to the patient, answer phones, and run errands, among other things.”  

            Choosing hospice does not mean, as many seem to think, that patients lose the services of their personal doctors.  The referring physician is a member of the hospice team.  In fact, many physicians find that hospice greatly enhances and extends the care they can provide.  Typically, physicians are encouraged to follow their patients through the hospice journey. 

            How is hospice paid for?  This is always among the first questions potential hospice patients and families ask.  Most people who use hospice are over age 65 and are entitled to the Medicare hospice benefit.  This benefit covers virtually all hospice services and requires little, if any, out of pocket expense.  For younger patients whose private insurance may not fully cover hospice care, end of life care with hospice can be far less expensive than the alternatives of hospital or nursing home care. 

            Hospice care provides comfort dignity, quality of life and time to those facing a life-limiting illness.  In addition to providing compassionate medical care and pain management, hospice care offers emotional and spiritual support to patients and their loved ones.

            Studies have shown that the most common report from families who have used hospice services for a loved one, is regret that hospice had not been called in sooner.  Patients and their families experience the greatest benefits from hospice care when it is accessed early. 

            For more information, check out the web site of the National Hospice and Palliative Care Organization.  It is www.nhpco.org.  Among other things, the web site provides a list of questions to ask when you are thinking about hospice services.  Their telephone number is 703-837-1500.