Breaking Myths around Hospice: What Does End-of-Life Support Look Like?

November is National Hospice Month. In recognition, it is important to understand how this valuable support can be of benefit when you or someone you know has a diagnosis of a life-limiting illness.

Many of us know of someone who has engaged hospice towards the end of their lives, but still the service seems both vague and ominous. What does it mean when the doctor brings up hospice? Are they giving up on finding a cure? When hospice is mentioned, it may even be the first time we truly realized a loved one is nearing the end. How can we make such an important decision when we are contending with so many strong emotions?

Officially, hospice services can be started when two specific conditions are met:

1. The person’s doctor certifies the patient has a life-limiting condition that is likely to cause death in the next six months; and
2. The individual with the life-limiting condition must stop pursuing curative treatments.

Admitting that the end is getting closer and willingly stopping the medications and procedures that have been slowing the progression can be terrifying steps to face, which is often why individuals go on hospice in the last weeks, or even days, of their lives rather than a full six months. When you have spent years fighting off illness and doing everything to gain more time, making this choice can be very challenging.

So why should you or your loved one consider signing on to hospice services? Medical care does not stop when you stop curative treatments; rather, it shifts to providing comfort and giving care in the location where you feel the most at home. You can still use your regular doctor for advice and support if you have a strong relationship with them, or you can rely more heavily on your new hospice team with their years of experience working with individuals at end of life.

Instead of going to a clinic or hospital for appointments, the hospice team comes to your home to monitor symptoms and prescribe comfort-focused medications. As the individual’s needs begin to change, they can visit as often as needed to ease pain and discomforting symptoms and are immediately accessible through 24/7 hotlines provided when your loved one signs onto services.

The professionals who make up your hospice team may vary depending on the organization and what you want out of their services, but often include the following:

• Nurses, who prescribe medications and order covered medical equipment.
• Certified Nursing Assistants, who give bed baths and help with changing wound dressings.
• Social Workers, who provide grief counseling and aid in making final arrangements.
• Chaplains, who provide for spiritual support.
• Volunteers, who provide companionship and help in life review.
• Alternative therapy providers (e.g., pet therapy, music-thanatology, massage, Reiki).
• Bereavement counselors and others who provide post-loss help or referral to support groups.

This level of support for your loved one as they near the end of their life can make all the difference when it comes to preventing hospitalizations and ensuring that they (and you) get help as changes occur—without the barrier of getting to a clinic. Hospice teams work as a part of a larger care network, so even as they begin to handle the majority of your loved one’s care, they can keep primary care doctors, oncologists, care managers, and other specialist services involved and informed to provide recommendations.

If you think that your loved one may benefit from the comfort-based focus and highly responsive care that hospice teams provide, you do not need to wait until your doctor brings up the option. You can start the conversation with their care team. Ask about when to start hospice services. Request options for comfort-based care approaches even before making that transition. Bring in a higher level of support sooner rather than later so you will have more opportunities to get expert guidance and spend more time being present with your loved one.

Contributor Kayleigh Creighton, MSW, LSWAIC, BFA, is a care manager associate with Aging Wisdom. She completed graduate studies in Social Work at the University of Washington in June 2019. Her internships during graduate school included one year with an in-home caregiving agency and the next year at an inpatient hospice facility.

Learn More about Hospice and Palliative Care

Suggested reading (available to borrow at Seattle Public Library and King County Library System):

• The Art of Dying Well: A Practical Guide to a Good End of Life by Katy Butler
• Being Mortal: Medicine and What Matters Most in the End by Atul Gwande
• When Breath Becomes Air by Paul Kalanithi

Online and local resources include:

• National Hospice Locator
• Washington State Hospice and Palliative Care Organization