Navigating the Shift: Life-Sustaining Care to Hospice
I have been giving a lot of thought lately to a transition that nearly all family caregivers go through. It’s the transition from life-sustaining, family caregiving to end-of-life, family caregiving when the care recipient becomes hospice status. Hospice is end-of-life comfort. Unlike Palliative Care, there is no concurrent, life-extending, or curative treatment, either because those options are no longer available or the patient has decided to discontinue them. Hospice also holds a prognosis of six months or less to live.
Because the average duration of family caregiving is 4.5 years, it can be especially difficult for a family caregiver who, for years, has been doing everything to ensure their care recipient is living as fully as possible with their condition to shift to providing comforting, end-of-life care. Despite a six-month prognosis, the average length of stay (LOS) in hospice status is just over 90 days. For cancer patients, the average time is 19 days. This means a huge adjustment must be achieved in an abbreviated time frame.
Hospice does not hasten death. In fact, studies show that it prolongs life. The number one regret of caregivers turned grievers following the death of their care recipient in hospice is that they did not access hospice sooner.
I often refer to this as the Triad of Certainty:
At the end of life comes death
There are no do-overs in end of life
Changed forever, loved ones remain and remember
The hospice phase is one of the most important times in a family caregiver’s life. It is the Precious Time. Different from life-sustaining caregiving when we lived by lab results, scans, vitals, appetites, and energy levels, hospice is the time to simply be present and say the I love yous, I’m sorrys, I forgive yous, thank yous, and good-byes. There won’t be a second chance at the death of your loved one, and you will think about it and live with it for the rest of your life.
We all have the right to choose any hospice organization that serves our area. We don’t have to go with the hospice our physician or hospital recommends. While the fundamental mission of hospice is universal, there are differences between hospice organizations. Some are for-profit, and others are not-for-profit. Some are faith-based, while others are secular. There is also the organization's culture to consider, as well as what you have heard in the community from friends and relatives that might help you choose or not choose a particular hospice. It is pretty much never too early to understand hospice, research the organizations in your community, and determine which one you and/or your care recipient will choose.
If you still need to research hospice and find yourself having to select one for yourself or a loved one, or if an engaged hospice organization is not meeting your needs, please consider some guidance from Hospice Navigator Service. They bring decades of experience and expertise in the field to every consultation. They offer free, 30-minute phone conversations (and subsequent guidance in the form of phone or video sessions at an hourly rate) and a hospice navigator concierge service. I referred a friend to them when she was trying to help her father (who was in another state) transition to hospice care, and the professionals at Hospice Navigator Service were compassionate, wise, and efficient. My friend felt profound gratitude for their help.