Why People Wait Too Long to Choose Hospice
Posted: 10/29/2018 2:13 PM by
Contibuted by Marianne Wait
Plenty of people devote time and energy to poring over retirement community brochures or planning the perfect retirement. But when it comes to planning a good death, for ourselves or an ailing loved one, no one wants to “go there.” We don’t find ourselves thumbing through hospice brochures just to see what’s available.
“Death and grief are something that we do not do well in this country,” says Tammy Fox, RN, national director of hospice for Interim HealthCare.
Most of us aren’t even quite sure what hospice is, or we equate it with giving up.
“It doesn’t mean you’re giving up,” says Fox. “It actually means that you’re choosing hope, and that you’re choosing to make the best of whatever time you have left.” Research suggests that patients on hospice may even live longer than patients who continue to receive standard care.
The “giving up” stigma is no doubt one reason many people don’t enroll in hospice until the very end, when it’s too late to reap the full benefits. A person typically becomes eligible for hospice when they have a terminal illness with a life expectancy of six months or less, but many people enter hospice care just days before their passing. The median length of hospice service is 24 days.
Another reason people don’t make use of hospice sooner is that “they don’t know what we have to offer,” says Fox. Unless they have a friend or relative who has first-hand experience with hospice, they may not realize that hospice can make the dying process less painful and traumatic — and even, if you can wrap your head around the concept, more satisfying — for everyone involved. Hospice will also help family members with the grieving process after the fact.
“The most common comment we get from families and caregivers after the person has passed is, ‘We wish we would have known about hospice sooner,’” says Fox. “We hear that over and over. ‘We wish we would have realized how hospice could help sooner, we wish we knew what you all did.’”
Even doctors wait too long to suggest hospice to their patients, says Fox. They may be more comfortable ordering additional tests and treatments than having a difficult conversation about palliative care. Some may be unwilling to “give up on” a patient and may view deeming an illness terminal as a personal failure. They may prefer to keep up the patient’s hopes rather than let them know the reality.
Once people do learn about hospice and how valuable it is, says Fox, “What we hope is that they’ll talk to each other and say to other family members, ‘You need to call hospice, they really helped me with Mom.’”
Elizabeth Ward enrolled her 91-year-old mother in hospice when she grew rapidly weaker and less responsive.
“She had been ill on and off for three years, wasn't eating well and was starting to refuse medical treatment.,” says Ward. “It was a relief to decide to get hospice care because it meant facing up to reality about the fact that the end was near. It was also a relief to know that we weren't going to have any more emergency room visits or doctor visits.”
Ward liked being able to administer comfort medications such as morphine and Ativan (an anti-anxiety drug) as needed. And she appreciated other aspects of hospice. “Our hospice nurse was so kind, as was the social worker, who helped me with my intense feelings and helped me to plan for my mom's death in practical ways, including having an advance visit with the funeral home.”
Some people describe dying as an end-of-life journey. Hospice can make that journey a better one, if we summon the courage to “go there.”
Marianne Wait is an editor and writer who creates content for brands.