When eighty-eight year old Mary*, an Avow palliative care patient living with lung cancer, was suddenly overcome by an excruciating head ache, she went straight to the hospital. Physicians there confirmed she was experiencing a brain hemorrhage. Bleeding (hemorrhage) incidents can be a complication for patients with stage 4 progressive cancer.
As Mary’s condition worsened, she was unable to communicate, forcing her son, John*, to make treatment choices for her. Had this event occurred just three weeks earlier, John would have been unsure of his mother’s wishes and racked with guilt regardless of his decision. Thankfully, Mary and her children had just held a family meeting facilitated by Avow to discuss Mary’s treatment wishes. It was the first time her children heard this information.
Considering Mary had been ill for quite some time, you might expect the family to know her wishes. But like most families – maybe yours – they didn’t know how to talk about such things.
It’s hard to have a conversation about treatment options and end of life through an intubation tube.
In my hospice work, there is nothing more heartbreaking than watching families divided by care decision choices. Disputes and misunderstandings make final days difficult and intensify feelings of grief. Completing an advance directive and designating a healthcare surrogate in advance can make an incredible difference in the end-of-life experience. At a minimum, families should have a conversation before any members become seriously ill, or better yet, while everyone is still healthy.
Thankfully because Mary’s family was fully informed of her wishes, they could confidently make choices on her behalf. Choices that allowed Mary to return home and receive comfort care through hospice during her final weeks of life instead of being hospitalized enduring aggressive procedures.
It’s a difficult subject to tackle.
Many people are afraid to share their feelings and wishes because they’re concerned about how loved ones may react. Talking in advance in the comfort of your own home, however, is preferable to discussing these matters in an emergency room – assuming you can talk at all.
If you are finding it difficult to approach the subject, “The Conversation Project” website provides resources and suggestions for getting started including these prompts:
- “Even though I’m okay right now, I’m worried that __________ and I want to be prepared.”
- “I need to think about the future. Will you help me?”
- Who you want (or not want) to be involved in your care. (This is especially helpful when you need to establish your healthcare surrogate or inform others about your selection.)
- Any concerns about your health or about the last phase of your life.
- Any disagreements or family tensions you may be concerned about.
- Your description of a “good death.”
Conversations are more productive if you are patient. Try not to steer the discussion, simply let it happen. Don’t judge and keep in mind that nothing is set in stone. You and your loved ones can always change your minds as circumstances shift. This conversation may be your first, but it certainly does not have to be the last.
Get a free Living Will Kit and Life Dossier planning workbook.
You can document your care wishes in an Advance Directive, also known as a Living Will. This document can be completed without involving legal counsel because it addresses your healthcare wishes in the event that you are not able to speak for yourself.
You can also declare who you’d like to serve as your healthcare surrogate.
This person serves as your advocate and should be confident doing so. He or she should clearly understand your wishes and be willing to accept the responsibility of making medical decisions for you. In order for this to happen, you will need to talk with your surrogate about your thoughts and feelings.
Avow has Living Will Kits and other resources such as “My Life Dossier,” a workbook designed to help you organize important documents and plan for emergencies and your final life chapter. Follow this link to download these resources for free by visiting our resources page or call us at 239-261-4404 and we will mail copies to you.
If you’ve been proactive and completed an advance directive, don’t keep it hidden in a drawer. At a minimum, make sure your doctors and your healthcare surrogate have a copy. It is also a good idea to revisit this document annually in case your wishes have changed.
Dr. Cynthia Nehrkorn is Vice President of Medical Services at Avow. She is certified in hospice and palliative care and internal medicine and has been a member of the Avow care team since 2003.
Avow was founded in 1983 as Collier County, Florida’s original, nonprofit hospice. Today, Avow’s companies care not only for those who are terminally ill, but also for those who have serious and chronic illnesses or who have suffered great loss. To learn more about the scope of services provided by Avow, call 239-261-4404 or visit www.avowcares.org.
*Names have been changed to protect privacy.
This guest editorial appeared in the 4/16/16 issue of the Naples Daily News.