FEN’s Surrogate Consultant — The First 100 Days

We are delighted to introduce FEN’s surrogate consultant, Althea Halchuck, to readers of The Good Death Society Blog. To say she has a wealth of experience is an understatement. We know she will be a great resource. Welcome,  Althea! — Kevin Bradley, Editor

My official duties as surrogate consultant for Final Exit Network (FEN) began January 1, 2021, but my FEN story started last summer. I am a certified patient advocate living in Arizona, and I have a business, Ending Well! Patient Advocacy. My work focuses on end-of-life planning and elder conflict resolution. I spent 15 years as a bedside hospice volunteer and I have training as a death doula, so I am not averse to talking about death or helping people who are confused, scared, and weary at the end of life.

I reached out to FEN as a possible referral source for my clients who might be seeking ways to legally end their suffering. Medical aid in dying is not legally available in Arizona and choices are limited. I was hoping to offer clients education about better exit alternatives. After a few emails, I had a phone conversation with former FEN president Janis Landis about what to do when a surrogate gets pushback for trying to honor an advance care directive.

Janis was interested in cases where there was a willful disregard of an advance directive or treatment option presented by the patient or surrogate. FEN wanted to create a professional surrogate advisory position, starting with a pilot program and then perhaps expanding to a hotline. The advisor would help patients or their healthcare proxy/surrogate by offering “in the moment” support and options if the patient or proxy got pushback regarding medical treatment. The pushback might be from a doctor insisting on treatments or tests that the patient does not want or from a hospice agency refusing to give adequate pain meds. I wondered if this was a common occurrence and polled some of my advocacy contacts. Following are two examples of actual cases.

An oncology hospice patient wanted to leave the hospital and go home to die because her curative options were exhausted. Her doctor told her the only way he’d “let her go home” (his words) was if she allowed him to put in a PICC line for nutrition and hydration. She refused and her case went to the ethics committee, who sided with the patient.

In such a situation, the surrogate advisor could inform the patient about her rights and suggest specific wording that would compel the doctor to honor the patient’s choice to go home unencumbered. This approach would hopefully avoid the ethics committee involvement as well as the angst experienced by the patient when forced to delay going home.

Another case of surrogate pushback came from a hospice provider. In recent years, hospice has morphed from predominately small non-profit agencies operating on a shoestring to national for-profit businesses, many of them franchises. According to the National Hospice and Palliative Care Organization, 62.2% of Medicare hospice providers active in 2017 were for-profit. More telling is that the for-profits grew by more than 17% since 2014 while non-profits decreased by almost 4%. To maximize profits, hospice administrators will sometimes push back against prescribing adequate pain medication or offering other comfort treatments. Featured in a recent FEN magazine, Barbara Mancini provides a cautionary tale about this topic in her book, Cruel Death, Heartless Aftermath: My Family’s End-of-Life Nightmare and How to Avoid It.

Barbara was arrested and charged with assisting suicide when she handed her dying father his vial of morphine after he requested it. While Barbara was readying his syringe, he ingested all of it to ease his near-constant pain. After Barbara related the story of what had happened, the hospice nurse came in and called 911 and the police. Barbara was arrested and stripped of her rights as healthcare surrogate. Contrary to his directive, her father died in an ICU, hooked to machines and without his beloved daughter advocating for his last wishes. She was ultimately acquitted, but not without a lot of heartache and expense.

When FEN requested that members relate their surrogate experiences, there was an outpouring of similar horror stories, enough to convince FEN’s board of directors that they were on the right track. I am honored by their faith in my ability to lead this program and help members empower themselves. I have a tab on FEN’s website, which includes a dedicated 800 number and email address, making my services available to every member nearly 24/7. In the past few months, I have heard from many members who have questions about their advance directives and living wills. Advance directives are state specific, and I am not an attorney so I cannot give legal advice or review legal documents. I can, however, answer general questions based on my knowledge and experience. The appreciative responses from members have been heartwarming.

I promote FEN on social media and elsewhere. I was interviewed by Jane Asher for her podcast, The Next Room, and by Helen Bauer and Jerry Fenter from The Heart of Hospice. I recently did a presentation for FEN volunteers, A Mediator’s Strategies for Conflict Management, discussing ways to navigate difficult conversations with clients and families. Most recently, I was part of a webinar presenting Tips on Choosing a Surrogate and Utilizing the Consultant Program.

Working with FEN has been an amazing ride, and the first 100 days have been both challenging and exciting. Every day brings new experiences and opportunities to help members help themselves. Other worthwhile projects are already in the pipeline, and there will soon be more presentations to other groups who want to learn about the surrogate program.

I could not have known that what began as a simple request for FEN brochures to help my clients would lead to an opportunity of a lifetime. One of the greatest benefits has been my association with this diverse and wonderful group of dedicated people. Most of them are volunteers who have a passion for this work. Through education and moral support, they offer distressed, often-desperate people better exit choices for the end of life. Like a Nantucket sleighride, I hold on with both hands and eyes wide open so I don’t miss a thing.

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