Kapok Aging and Caregiver Resources: What They Don’t Tell You About Hospice Care
By Angelica Herrera Venson, DrPH, MPH
The following excerpt is reprinted with permission from Kapok Aging and Caregiver Resources.
Hospice care provides important support at the end of life, allowing people dignity and quality of life. Yet, it’s also a topic that’s highly misunderstood.
Part of the problem is that end of life is a scary idea. Many of us avoid talking about it for as long as possible. There are also many myths and misconceptions about hospice, making it even harder to know what’s true.
In this post, we’re looking at some of the less well-known details about hospice. Many of these are positive, but there are some problems with hospice care in the mix as well.
Surprising Benefits and Problems with Hospice Care
1. Hospice Isn’t All About Death
By definition, hospice is end of life care. However, this doesn’t mean that it is focused on death or that patients are giving up.
Instead, hospice is a chance to step back and focus on quality of life.
After all, the process of keeping people healthy and extending life can be arduous. Seniors may need a seemingly endless string of appointments, tests, and perhaps procedures to help them live just a little bit longer.
Such processes can be exhausting, stressful, and may not even help much.
Hospice drops all of this away.
Seniors get the chance to focus on what matters instead, including meaningful connections with family members, thinking about their legacy, and perhaps turning to faith.
If they start hospice when they are still mobile, seniors may also have more free time to get engaged in life. Perhaps they might even go on one last great adventure.
2. The Quality of Care Can Vary
Hospice providers need to provide many basic services, including patient care, care coordination, grief counseling, and caregiver support. However, there’s plenty of variation in the quality and quantity of services.
Research even shows that for-profit hospice companies tend to have fewer extra services and are often less well-staffed.
Indeed, hospice care isn’t always as safe or as helpful as it should be.
There are many cases where things have gone sideways, including patients enrolled into hospice when they didn’t need to be and overdoses of pain medication.
Some people even die in hospice when they weren’t actually that ill beforehand.
Other times, patients may find that their hospice helpers don’t always turn up when they’re meant to, potentially leaving hospice patients in agony.
Families and patients with limited medical knowledge are in a challenging situation here, as it’s easy to go with the first option that’s presented to you.
This is why it’s so important to research the companies your loved one has access to. It also helps to get a second opinion about the best course of action.
Angelica Herrera VensonAngelica Herrera Venson, DrPH, MPH is a gerontologist born in San Diego and raised on both sides of the U.S-Mexico border. She’s a public health advocate who has spent two decades in community health work and research investigating how immigrant and racial /ethnic minority family caregivers and seniors navigate old age and seek out health and elder care. Today, Angelica supports some of Arizona’s community health centers, which serve primarily Medicaid and underserved communities, in their transition to value-based care.
About Multicultural Guide to Caregiving
Author and gerontologist, Angelica P. Herrera Venson, DrPH, opens up and shares her family’s personal stories and lessons from her field work and research on aging and caregiving with communities of color and first generation Americans.