There is a stigma to hospice. Patients who qualify for hospice are often considered losers who have given up. It’s a shaming, derogatory word like “retarded,” used to malign those mentally challenged. These people began to receive better recognition and attention when others stopped referring to them as retarded or unworthy. Despite what hospice workers promote, a hospice patient might well be considered “retarded” or a “dead man walking.” How can these patients maintain self-respect while selectively being discounted as less than human and not worthy of physicians’ time and attention?
From caring for patients with chronic illness in the ER for over 25 years, I approach these patients as a type of focus group. What do they want? What do they find wrong with healthcare delivery? I find that the chronically-ill unanimously detest the word hospice, become insulted by the mere mention of it, and have visceral reactions that erupt in anger. Patients might feel miserable and have no desire to stay in the hospital, but they’ll be damned to consider hospice. They don’t like being sold short and firmly believe more should be done for them.
What patients prefer to receive is palliative care – the other type of healthcare for the chronically ill. Medical care treats disease with medication and intervention. Palliative care engages patients in self-respect and wellness. Medical care and palliative care are separate disciplines that comprise integrative (holistic) healthcare that addresses the needs of mind, body and spirt.
Hospice overshadows palliative care with Medicare only funding hospice. Patients are being denied one of the most valuable resources for dying with dignity, home-based palliative care. Patients are more likely to choose to die at home if they are receiving home care without being called a “hospice” patient. Palliative care serves those with chronic terminal illness without time limitation or judgement. It’s the primary model for compassionate “person-centered” care and a godsend for family caregivers.
I liken palliative care to a nonmedical wellness program emphasizing stress reduction and quality of life. The end of life should not be perceived as a medical condition that needs treatment. It’s a spiritual journey like any path leading to a state of wellness. “All’s well that ends well,” but not usually for hospice patients who are pitied. Palliative care allows chronically-ill patients to live well up until the end. There’s no shame in continuing to live on their own terms, as a matter of choice, without the label “hospice” patient.
Change happens one patient at time through personally rejecting hospice and demanding palliative care. This revolution begins with the release of my booklet, “Is Palliative Care Right for YOU?” on Amazon.com. You won’t know if you want palliative care until you know more about it. This easy-to-read booklet explains palliative care in practical terms and is chock-full of tips for patients and their caregivers to better manage chronic illness. It includes a short questionnaire, outlines ten patient goals and personal values, AND informs patients of their “palliative care rights.”
It is 2018! Out with the old (hospice) and in with the new (palliative care) resolution for better management of chronic terminal illness. “Is Palliative Care Right for YOU?” is a gift of compassion that promises to replace the condemnation of hospice.