By Michelle S. Hayes, LCSW, OSW-C 

Advance care planning – the term sounds preparatory, informed and organized. In actuality, the creation of an advance directive or plans for a future in which you may need help making decisions or caring for yourself can be anxiety-provoking and fear-based, offering significant fodder for procrastination. We could reason that anyone reaching the age of 18 can and should have a plan to make their wishes known and identify who will support them in this plan. So, why don’t we? (See anxiety-provoking, fear-based and procrastination, above.) 

At the Dempsey Center, in Lewiston and Greater Portland, Maine, our mission to make life better for people managing the impact of cancer includes providing comfort through compassion, connection and choice.[1] One way we aim to promote this mission is through our Honoring Choice program – a six-session workshop series, open to the public. Through these sessions, we address advance care planning with education and discussion surrounding advance directives, palliative care, hospice, medical aid in dying, and other topics, geared to support anyone with a cancer diagnosis, as well as their care partners and other loved ones. 

While there are a multitude of advance directives available to the public and through healthcare systems, we’ve chosen to partner with a national home health and hospice provider to walk clients through the Five Wishes document. What we at the Dempsey Center and our participants like about Five Wishes, specifically, is the opportunity to talk about “personal, emotional, and spiritual needs as well as your medical wishes”. [2] 

What we’ve found most prominent in the questions participants bring to our palliative care workshops, led by a local palliative care physician and hospice medical director, is the lack of differentiation with hospice, giving voice to the fear many clients express when relaying their provider’s suggestion of a palliative care referral, assuming, often incorrectly, that they or their loved one is nearing end of life. While we, as oncology social workers, may tout the vast benefits of getting palliative care on board early in the cancer journey, we also come face to face every day with the lack of education reassuring clients of the same. 

The hospice portion of the series is led by a registered nurse serving as hospice manager for a local home health and hospice organization, alongside their social worker and chaplain. In this session, we often encounter questions related to hospice at home – what it is and what it isn’t, how it might differ from care at a hospice house, and the related costs of each. We also create a space for individuals to share their concerns about dying at home – ‘will there be enough care and support?’, ‘what will happen?’, and from care partners ‘will I be able to continue living in the space where he died?’.  

The fourth session of the series offers time with the executive director of Maine Death with Dignity, a 501(c)(3) non-profit “providing services, fact-based education, and end-of-life advocacy to people who wish to actively explore the meaning of life through embracing the certainty of death”.[3] As relatively new legislation – initially enacted in Oregon October 27, 1997[4] – and with limited availability (11 states as of this writing), many participants bring questions surrounding the how as well as the why. 

Our fifth and sixth workshops in this series include a screening of Being Mortal, a film directed by Aziz Ansari and based on Dr. Atul Gawande’s book by the same name, with some time for Q&A, and discussions with a local end of life doula, respectively. These two offerings are new to the series this summer and we expect they’ll be an appropriate and welcome addition to the series. 

We’ve made the decision to open these programs to the public as a way of reaching more people with big questions, and to increase awareness of the supportive oncology care that we offer at the Dempsey Center. Since its inception in early 2023, this series has grown from three to six sessions and is always well-subscribed. I’ve found that by offering these difficult, yet necessary topics together in a series, we develop a core group who then form connections and offer peer support to one another through their questions and shared experiences.   

References 

1. https://www.dempseycenter.org/ 
2. https://www.fivewishes.org/resources/ 
3. https://www.mainedeathwithdignity.org/ 
4. https://www.oregon.gov/oha/ph/providerpartnerresources/evaluationresearch/deathwithdignityact