Making the Most of End-of-Life

Denise
This morning, Dr. Daniel Maison, Vice President for Medical Services and Chief Medical Officer at Treasure Coast Hospice, Stuart, Fla., joined us for a discussion about end-of-life decisions on Your Caregiving Journey. (Dr. Maison is also Physician Section Leader for National Hospice and Palliative Care Organization's National Council of Hospice and Palliative Professionals and Clinical Assistant Professor at Florida State University's College of Medicine.) The inspiration for our show was a recent New York Times article about terminal sedation. You can listen to our show via the player at the bottom of the post.

Dr. Maison explained what happens at end-of-life:

  • First, we need help with our activities of daily living (ADLs), such as dressing, bathing, feeding.



  • We experience weight loss.



  • We need more medical support to maintain our status quo.


Then, as death nears:

  • We stop eating.



  • We have a changing level of awareness.



  • At the very end, we may have a temperature and we may have a change in our circulation (our feet may become cool) and vital signs.


Within your caregiving situation, you'll notice a cycle of "good and bad" that shortens as end of life nears: You and your care recipient have good and bad years, then good and bad months, then good and bad weeks, then good and bad days, then, finally, good and bad moments.

Dr. Maison offered a great suggestion: As we seek more and more medical attention for our care recipients, take advantage of the opportunity to talk to health care professionals about the future. So, for instance, during a re-hospitalization for a similar reason, on the last hospital day, begin the conversation with your care recipient’s physician: What options do we have other than another hospitalization? Can we prevent another hospitalization? If we can’t, what other options do we have? What kind of improvement in my care recipient’s condition can we expect? How can I best keep my care recipient comfortable?

Then, continue the conversation with the physician during your care recipient’s follow-up appointment. Between the discussion at the hospital and the one at the follow-up appointment, you can share information and options with your care recipient (if appropriate) and other family members.

We also discussed the reality that we never know when death will occur. We want so much to have a final, heart-felt good-bye with family and loved ones just before death. But, because we can’t know when death will come, we can only know that we have today to share any messages of love and thanks. So, today, do it.

Resources

National Hospice and Palliative Care Organization has a great website to help family caregivers: www.caringinfo.org. In addition, the organization has a toll-free HelpLine: 800-658-8898.

Five Wishes: Five Wishes is a workbook that helps you and family members express how you want to be treated if you are seriously ill and unable to speak for yourself. It deals with all of a person's needs: medical, personal, emotional and spiritual. For more information and to order, visit here.

A Handbook for Mortals: A terrific handbook about end-of-life.


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