Gardens within gardens...
First things first. Yes, there is a garden at the Virginia Thurston Healing Garden Cancer Support Center in Harvard. It's everywhere.
And here, among other places.
"End Game isn’t an easy watch, but it’s a film America needs."
Shoshana is an executive producer on End Game, and joined us via video to introduce the film.
We watched Mitra
Pat, and the people who loved them.
Brianne guided the post-film discussion track: "Facing loss, finding meaning, being human: the clinician’s challenge."
Jerry guided the post-film discussion track: "Tools and strategies to inform conversations about prognosis and goals."
Everyone viewed the film, actively participated in both discussion tracks, provided thoughtful evaluations, and acted on their personal commitment to lifelong learning, as evidenced by...
- Brianne Carter, LICSW, MTS, OSW-C
- Rachel Lucas
- Kelly Marchand
- Christine Zinke, LICSW
- Timothy Boon, RN
- Colleen Cusack
- Catherine Monoxelos, PT
- Jennifer Sax
- Linsey McNew
MORE FREE STUFF BELOW!
Facing loss, finding meaning, being human: the clinician’s challenge
Brianne Carter, LICSW, MTS, OSW-C
1. Mitigate clinician burnout through increased awareness of the physical and emotional impact associated with working in a field where significant loss is a common experience.
2. Discuss the effects on clinicians of working with suffering, loss, death, and grief.
3. Identify ways to improve clinician well-being, find meaning, and feel a sense of purpose.
While watching the film...
Notice what goes on in your body as you watch the film — see if you can stay present with what you are experiencing as the film moves you, especially in conversations or scenes about death.
“There is nothing inherently medical about dying. It is much larger than medicine. Dying is purely human. Part of the mission is to keep all of this couched in humanity. Not medical science or social science but the full arch of humanity. Kindness. Total openness. Vulnerability.”
~ B.J. Miller, MD Zen Hospice Project
Question 1: What did you notice about what went on in your body while watching the film? Are these responses ones that you have to “turn off” or “ignore” when working as a provider?
B.J. Miller at Zen Hospice Project said: “My interest in being a physician was learning to live with my own illness, trying to fashion life when shit goes wrong… When I stopped comparing my new body to my old body, when it wasn’t about what I lost, I stopped suffering. My identity had accommodated the facts of my life. I like to think of suffering as a gap, as a wedge between the world you get and the world you want… The basic principle of the Zen Hospice Project is you don’t run away from hard stuff, you don’t run away from suffering.”
Question 2: What has been your original and continued motivation to work in this field?
What sustains you while you accompany others through relentless loss (death, ambiguous loss, traumatic loss) and suffering?
B.J. Miller at the Zen Hospice Project gives one of his patients an assignment, “...to have some sort of relationship with death… If we can’t change not knowing what it is like being dead, then getting used to holding the mystery.”
Question 3: After watching this film, what would you say is the quality of your relationship with death? Give it one adjective: _____________________.
What kind of relationship would you like to have with death?
“To live in this world, you must do three things:
To love what is mortal
To hold it against your bones knowing your own life depends on it
And when the time comes to let it go, to let it go.”
Some suggested reading
Gawande, A. (2014). Being mortal: medicine and what matters in the end. New York, NY: MacMillan.
Kalanithi, P. (2016). When breath becomes air (First edition.). New York, NY: Random House.
Oliver, M. (2017). In Blackwater Woods. Devotions: the Selected Poems of Mary Oliver. Penguin Press.
Ostaseski, F. (2017). The five invitations: Discovering what death can teach us about living fully. New York, NY: MacMillan.
Tools and strategies to inform conversations about prognosis and goals for care
Jerry Soucy, RN, CHPN
1. Describe the key difference between palliative care and a hospice plan of care.
Palliative care may be appropriate with any diagnosis, prognosis, or age. A hospice plan of care may be appropriate for someone diagnosed with a serious illness with a prognosis of about 6 months or less.
2. Identify 4 aspects of the patient’s and family’s experience of serious illness and end of life that are important for clinicians to assess and address.
1. Their understanding of prognosis.
2. Their preferences for treatment at end of life.
3. The current, desired, and maximum symptom burden.
4. The current, minimum, and desired quality of life.
3. Describe the role of a surrogate for making decisions about medical treatment.
a) Ethical constructs: substituted judgement, informed consent, autonomy, self-determination.
b) Application in practice - Massachusetts Health Care Proxy.
Application to social work practice - Skills and strategies for assessing and supporting informed decision making in the context of serious illness and end of life.
1. How can we provide a context to help patients, families, caregivers, and clinicians understand disease progression, symptom burden, functional decline, prognosis, and “What happens next?”
Tool - The Palliative Performance Scale (PPS)
2. How can we guide a systematic assessment for symptom burden, quality of life, and patient/family-centered goals for care?
Tool - The modified Mini Suffering State Exam (mMSSE).
3. What factors can contribute to optimal patient/family-centered outcomes?
a) Exploring their knowledge, understanding, values, and priorities;
b) Establishing meaningful and attainable goals for care;
c) Matching options for medical treatment to the goals.
Tool - Ask five questions, choose the goal, select the treatment.
Boucher, J, Bova, C, Sullivan-Bolyai, S., Theroux, R., Klar, R. Next-of-kin’s experiences in End-of-Life Care. Journal of Hospice and Palliative Care Nursing. 2010;12(1):41-50.
“Communication issues emerged as an important concern for the next-of-kin respondents. Specifically, they used both positive and negative terms to describe their concerns about receiving information on what to expect at the end of life, the how and when of dying, to whom they should communicate information, and healthcare providers’ styles of presenting sensitive information.”
El-Jawahri, A. et al Qualitative Study of Patients’ and Caregivers’ Perceptions and Information Preferences About Hospice. Journal Of Palliative Medicine. 2017;20(7):759-766.
“Study participants had misunderstandings about hospice and perceived end-of-life (EOL) concerns such as fear of suffering, loss of dignity, and death, as well as lack of knowledge as the main barriers to hospice utilization. Interventions are needed to educate patients and their families about hospice and to address their EOL concerns.”
Epstein, A. et al. Development of an advance care planning paradigm for advanced cancer: person-centered oncologic care and choices (P-COCC). Psychooncology. 2017;26(6):866–869.
“The discomfort reported by several participants in this study reflects the delicate nature of having advanced cancer and discussing values regarding advance care planning (ACP) in that context. Nonetheless, all these participants indicated that such questions were necessary and relevant. Additionally, approximately one third of patients who were eligible declined to participate in the study, which reflects known challenges in accruing patients with advanced cancer to behavioral research.”
O’Donnell, A. et al. Social Worker–Aided Palliative Care Intervention in High-risk Patients With Heart Failure (SWAP-HF): A Pilot Randomized Clinical Trial. JAMA Cardiol. 2018;3(6):516-519.
“Patients at high risk for mortality from heart failure (HF) frequently overestimate their life expectancy. Without an adverse impact on quality of life, prognostic understanding and patient-physician communication regarding goals of care may be enhanced by a focused, social worker–led palliative care intervention that begins in the hospital and continues in the outpatient setting.”
Whitehead, P. Carter, K. A Model for Meaningful Conversation in Serious Illness and the Patient Preferences About Serious Illness Instrument. Journal of Hospice & Palliative Nursing. 2017;19(1):49–58.
“Engaging the patient as a partner in their care decision making will yield care that is reflective of the patient’s wishes and consonant with best practice. The Patient Preferences About Serious Illness Instrument (PASI) is an option for healthcare providers to provide a structured, comprehensive methodology in eliciting dialogues with patients and their families.”
- added images of Thelka, Bruce, and Pat from End Game.