Hospice care, which is now a well-utilized Medicare benefit, has been statistically shown to reduce Medicare costs by preventing hospitalizations and reducing late-in-life medical interventions. In addition, the majority of families and caregivers who have experienced hospice care for their loved ones report that they found their own fears associated with death and dying were reduced, they felt more confident in their abilities to provide care, and they felt their loved ones had support to enjoy quality of life and dignity in spite of debilitating illness.
To accept hospice status does not mean a person is giving up, but it does mean an end to a struggle. To enter into hospice care means one is accepting a paradigm shift – away from curative measures and a “fight at any cost” philosophy, and toward finding a way to live with an illness. Living with the illness is a concept that is at the core of hospice care, where the focus is on valuing and making good use of the remaining time.
Depending on the individual’s diagnosis and the point in time at which they entered the hospice program, time may be short, or it may be fairly lengthy. Unfortunately, because of the aversion to the idea of hospice, for many the time of hospice involvement is far too short. A recent study by the National Hospice and Palliative Care Organization revealed that, although the numbers of individuals using hospice programs has increased in the past decade, the average length of time spent under hospice care has decreased.
Sometimes a patient will say, “I’m ready for hospice but my family isn’t.” This is a time to begin a conversation, not end it. If a family is not ready to accept hospice status for their loved one, they are clearly not aligned with the patient’s current place in their journey with their illness. What better time than now to talk about fears and concerns, and to speak openly about the sense of loss that may be silently and relentlessly filling the space between them? Such a conversation would likely include an exploration of goals, and a discussion of individual priorities. It could lead to the decision not to become a hospice patient and to continue seeking treatment, or it could lead to the discovery that the concept of “end of life care” has unearthed concerns that can now be addressed. And, should an individual chose to end treatment and to accept hospice care, it is an invitation to family members to respect and honor these wishes.
When a family comes together in support of their loved one – when they each identify ways to become part of the plan of care (rather than turning all care over into the hands of the medical professionals) – a sense of unity, strength, and even healing can emerge. The release from the struggle against the illness makes room for energy and time to be spent on other things: meaningful sessions with loved ones, quiet contemplation, “bucket list” activities, righting old wrongs, putting affairs in order, discovering a deeper connection to self or to one’s higher power, or simply engaging in favorite activities that may have been forgotten when the person’s illness somehow became the overarching definition of who they are, and medical appointments became the “activities” that comprised a life.
The hospice program is designed to meet such needs, with individualized care plans that invite patients and families into the process. The hospice team, although operating under the direction of a physician, is composed of both medical and non-medical service providers. It involves a holistic approach to health care that identifies the patient as the expert on his or her needs, while the family and caregivers are identified as equally important and deserving of support, education, and reassurance. Attention is not only paid to physical needs, but also to emotional, spiritual, relational and financial concerns.
As natural as it is for every human to hold the idea of death at a distance, when a person has been forced to face mortality because of a medical diagnosis, or when a family elder displays changes that indicate a shift toward a late life stage, these are circumstances that offer opportunities for growth, healing, and peace. The gift of life, which is so often taken for granted, comes with no guarantees. The gift of time – however short – comes with many opportunities.
This article was submitted by Anita Miller, MSW, from Granite Mountain Home Care and Hospice, an affiliate of Kindred at Home.
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