“You matter because you are you, and you matter to the end of your life. We all do what we can not only to help you die peacefully, but also to live until you die” — Dame Cicely Saunders, founder of the hospice movement.
While there continues to be more widespread acknowledgement of the immeasurable benefits of hospice care, many would argue that this program is not utilized in a timely manner. Delaying a referral can unfortunately negatively impact the effectiveness of this highly regarded end of life care. According to a study published in the Journal of the American Medical Association (JAMA) more that 25 percent of the hospice use was for three days or less and 40 percent of those late referrals followed a hospitalization with an intensive-care stay. As so often the case, informed and honest communication between the health care professional and the individual and his support system is key when determining the appropriateness and plan for a referral for hospice care.
Hospice services are funded by Part “A” Medicare. Those eligible for this benefit have or have had an illness that has, sadly, been deemed terminal with a life expectancy of six months or less. The hospice philosophy emphasizes “palliative rather than curative treatment and quality of life rather than quantity of life” (Hospice of Dayton). There is no charge for Hospice services although there may be some co-pays for medication and some costs may be incurred for an inpatient hospice stay. Since there are no absolutes when talking about a terminal diagnosis, hospice services can be extended beyond six month with completion of additional physician documentation, re-confirming the terminal diagnosis.
A report from the Journal of Pain and Symptom Management suggests that care focused primarily on comfort rather than more aggressive treatments may actually extend the lives of some terminally ill patients. The authors attribute this finding to fewer medical interventions and more supportive care. Members of the hospice team primarily include a nurse, physician, home health aid, volunteers, social workers and a chaplain. Different hospices provide additional services including music and massage therapy, among other personalized services.
Until recently, it was presumed that hospice care could only be provided in a hospice facility, nursing home or hospital. As these facilities are available to provide more acute services such as helping with pain medications and management of symptoms associated with one’s terminal diagnosis, most hospice care is provided in the individual’s home. This enables the person the comfort and control to die at home, which research overwhelmingly indicates is preferred. It also provides families the extraordinary opportunity to partner in the care of their loved ones, while being supported by a team charged with assisting the dying individual and his family.
Should there be a question about the appropriateness of a hospice referral, as it pertains to a diagnosis and the likely course of the illness, it is encouraged to have this discussion with the primary care physician. If questions remain, a hospice consultant can visit to provide more information on the program and if needed, help facilitate a referral to the program. Transparency is key to make sure that all parties are aligned when developing a plan a care that may or may not include hospice.
Some questions to ask when choosing a hospice:
1.Is staff available 24 hours by phone or in person a day to provide assistance?
2. How long has the hospice been in business?
3. Is the Hospice accredited by the Joint Commission (not required but definitely a plus if certified)?
4. If care needs to be provided in a nursing home or assisted living, will services continue?
5. Has the medical director received specialized training in hospice and palliative care?
6. Can I speak with other families who have used a particular Hospice to learn about their experiences?
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Marci Vandersluis is a licensed social worker and has a master’s degree in gerontology. She is employed as a care manager assisting older adults in the community connect with needed services. Email: firstname.lastname@example.org.