"Did he really say, 'If you're going to die, what difference does it make?'?!!"
As a colleague and I walked out of the Congressional office, I turned and asked, "Did he actually say what I thought he said?"
She responded, "Yes, but I thought surely I must have misheard him."
We had just explained to the Congressman that in some cases, patients, although terminally ill, do not elect hospice care. Yet, to receive home healthcare benefits until death, they must continue to meet homebound requirements, which deprives them from enjoying the outside world in the remaining weeks or months of life.
The disconnected response from this powerful Congressman has lingered in my mind ever since, as reflection of either gross insensitivity or ignorance, and challenges me to tell the story of home health and hospice to everyone I meet.
Similar to home health, hospice care is more than a just another service in the ala carte menu of Medicare coverage. Hospice is a unique and incalculable value. It offers an exceptional set of services to persons at a distinct point in their life journey. Moreover, as important as the services are to the patient, hospice offers the patient's family the critical information and support they need at this point in their loved one's life.
Nursing clearly has been ahead of its time. When medicine and other health professions were treating individual diseases or individual parts of the human body, nurses were thinking of patients as whole people. They were taught and understood that disease and healing involved not only the body, but also the mind and the spirit. They also understood that a patient-a person-does not live in isolation, but is a member of a family unit that must be actively involved and integrated into the overall healing process. As the rest of the medical world is belatedly catching on to this reality, nursing, particularly the home care and hospice fields, has been there for a century. And perhaps hospice illustrates this holistic nursing approach best.
Whether you are a hospice nurse or a home care nurse, you are familiar with the hospice model of care. Hospice treats the whole person and his or her family. The goals of the hospice team (and hospice takes that term "team" seriously) are to control the pain or other discomfort, to maintain the patient's functionality, to keep the person at home, to keep family and friends involved in this end-of-life experience, to maintain a sense of community involvement through volunteers, and to support the emotional and spiritual needs of the patient and family.
When hospice works well (and it generally does), it brings comfort and closure to the person and to his or her family. The benefits are so much more than the costs of hospice versus curative care expressed in dollars and cents, on which the Centers for Medicare and Medicaid Services, Congress, and health economists tend to dwell. Very tangible savings in terms of family illness and emotional dysfunction are experienced both during and long after the patient's end-of-life experience. Moreover, intangible benefits from that same holistic approach are enjoyed by the patient, the family, and the community. What is the value of controlled pain or emotional closure for a family?
Perhaps the lack of a hospice experience is the best way to answer the question of whether hospice really makes a difference. The following story shows what can happen without hospice care.
Roy was a 38-year-old cab owner-driver in New York City, a tall, hefty guy with dreams of expanding his 1-cab fleet into a full-blown company. His wife, a visiting nurse, became concerned when Roy seemed to be losing weight for no apparent reason. She eventually got him out of the cab long enough to see a doctor.
After Roy had undergone almost 2 years of treatment for a wide variety of medical diagnoses, the doctors in desperation did exploratory surgery and found an advanced carcinoma of the kidney with multiple metastases. Roy was sent home to die in the care of his wife, Elizabeth.
Although his family physician and wife did their best, Roy's pain was poorly controlled. When not fully sedated, the normally genial and fun-loving Roy seethed with anger and was racked with pain. His young son, Bobby, was sent away with relatives to spare him the experience of seeing this very different version of his father. Roy died a few weeks later at home.
Nothing in Roy's death was a hospice experience. There was unnecessary pain and suffering. There were no spoken last words, no spiritual support for Roy or his wife. There was no closure for Roy, his wife, or his young son.
For Elizabeth, there was guilt and anger and an unclosed chapter in her life. She covered this open wound in her soul with denial and filled her life with work. She never became herself again. Under her smiley veneer, she became cold, distant, and unable to love again. She never remarried, and became increasingly suspicious and distrustful of others.
Roy's death had 2 victims: Roy and Elizabeth. With hospice it is likely there would have been only 1, and perhaps with a good hospice experience, none. At least that's what Bobby believes now that he is grown up and works for VNAA.
Those of us who have experienced hospice as family members or professional caregivers know there is a way to die in despair and a way to die with dignity, and yes, it does matter. Yes, Congressman, even if you are going to die anyhow, hospice does make a difference!! And that difference has societal and personal implications far beyond annual Medicare and Medicaid budgets. That is why hospice foundations receive unsolicited gifts from family members and friends looking for a small way to say thank you. It is why hospice volunteers can be recruited and why they serve so long and so well.
In the democracy we have inherited, we are gifted with the ability to tell our elected representatives what really matters to us. We do not inherit gifted legislators or even legislators who can answer the question "If you are going to die, what difference does hospice make?" It is our obligation as citizens and healthcare professionals who have experienced hospice to tell that story and tell it in a way that burns into the conscience of even the most distracted legislator. I hope you will join VNAA in this mission.