I just jumped from one conversation format to another, from “Caring Engagement Conversations” related to my book and talks … to End of Life Conversations using The Conversation Project resources in a circle-salon-cafe-style workshop I’m doing next week with yoga studio members.
So call me, the Conversation Lady.
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Today I’m going to share my preparation for my first “Being Well While Making Big (life and end-of-life) Healthcare Decisions” … with yoga studio members.
Introduce myself and why this subject is important to me
- I am a nurse and nurse leader. I write and speak, mainly about nursing and wellness
- What I hold dear about nursing is that the profession has a social contract with society and humanity at large
- Nursing designs and provides care and healing within the healthcare (HC) system
- I was a nursing administrator in hospitals for > 35 years
- I participated in complex cases as a mediator or advocate where there were conflicts or ethical and spiritual issues at stake
- This is a subject near and dear to my heart
Why we are here?
- Maintaining one’s sense of end of life (EOL) wellness – sense of agency – requires several things:
- Knowing your EOL wishes
- EOL conversations – a lot of them, ongoing
- Advance Directive completed
- Healthcare Proxy identified
- My aim:
- Connect through shared thoughts and feelings about death and dying
- Learn information about EOL decision making
- Think about how to have EOL conversations with the important people in your lives
- Think about who to choose to be your healthcare proxy
- Learn about EOL resources available
- What brings you here? Go around circle
- (I suspect the following:)
- Parents or loved ones are aging or declining
- Past experiences that may have propelled people here
- Personal interest
- (I suspect the following:)
Why is this important?
- We will all be caregivers at some point in our lives and will be confronted with life and EOL healthcare decisions
- Data
- An estimated 80% of people do not have the deaths they desired
- 75% of people want to die at home, 25% do
- 92% of people say that talking with their loved ones about EOL care is important
- 32% have actually had those conversations
- 80% of people say that if seriously ill, they would want to talk to their doctor about EOL treatment and wishes
- 18% report have had that conversation
- Natural tension within Healthcare system
- Saving Lives vs Allow Natural Death (AND)
- (Depth of this depends on where audience takes it …)
- Saving Lives vs Allow Natural Death (AND)
- Best solution is having conversations early and often about EOL … way before a healthcare crisis
Yoga tradition – related to this audience, although the principles are universal
- This fits right in with the yoga tradition …..
- Talking about death and dying is part of life balance. Nothing is permanent. All things are temporary.
- Life and death is central to wellness consciousness. Our wellness consciousness is deepened through our evolving understanding of death and dying
- Our metaphysical and spiritual journeys through yoga and other practices can be challenged if we do not have a command of the practical aspects of these healthcare decisions
- Learning how to embody our wellness consciousness while navigating big life and EOL paths thru healthcare decisions for ourselves and our loved ones helps us maintain quality of life, expand our insights and deepen our connections with others.
- Like yoga, these conversations are ever evolving
Facilitate conversations around:
- What is a good death ?
- What matters most to you when it comes to EOL?
- Who in your life do you think of talking with about their EOL wishes?
- What do you want to know?
- What is your plan – when and where?
- Who in your life do you think of talking with about your EOL wishes?
- What do you want them to know?
- What is your plan – when and where?
- Do you know what a healthcare proxy is?
- what makes someone a good, or bad choice?
- Who comes to mind as your choice?
- Do you know what an Advance Directive is?
- Have you completed yours?
- Have you talked with family about theirs?
- Lead group through tools (see below)
- Evaluation
- Offer another workshop (depending on how it goes?)
The following Talking Points are available for me … depending on the direction of the attendees
Healthcare
- Healthcare continuum:
- Born well (most of us are born with well bodies) — Prevention — Treatments (for illness, disease, injury) — Maintenance — Palliative — Hospice — EOL
- Healthcare decisions can be on automatic pilot …
- There are a lot of automatic decisions and actions… It’s like being on a conveyor belt ….
- Refer them to article, Prevent Unnecessary Medical Care …
- The body tends to come first in healthcare … related to the science and technology
- As science and technology have grown, so have life saving practices, making EOL decision making less clear
- Futility has been a common standard used to determine timing of death for cancer, head injuries, vegetative states, … but evolving
- Frailty Indexes – The surge in chronic diseases makes timing of death hazier
- Drugs and procedures can keep us alive for a long time with CHF, COPD, kidney failure, etc while quality of life declines unnoticed. Frailty indexes are helpful
- Note- If there is a cancer diagnosis, the use of palliative and hospice care are more readily supported because futility can be more easily determined…. But even these situations can get hazy…
- Healthcare is evolving along with our Western Wellness Renaissance …
- Rising cultural consumerism and wellness consciousness are shifting HC…
- Wellness centers– Holistic care – Integrative care – Functional medicine
- Rising cultural consumerism and wellness consciousness are shifting HC…
Saving lives vs Allow natural death (AND)
- Life Support – to use or withdraw?
- Life support measures –
- breathing machines – if and when?
- feeding – if, when and how?
- fluids – if, how and when?
- medications – if, what and when?
- treatments and interventions – if, what and when?
- hospitalizations – if and when?
- Life support measures –
- Allow natural death – AND
- Historically people died naturally
- AND practices vary depending on location and cultures
- Bottom line: YOU have to be the pilot of your healthcare …
- The decisions between life support vs AND are dictated by patient wishes
- Active decision-making is critical for yours and other’s sense of wellness/quality of life in EOL
- Best decisions are made prior to a healthcare crisis
- Make distinction between health crisis vs healthcare crisis
Tools
The Conversation Project /Purpose A gold mine of conversation tools!
“The Conversation Project is a public engagement initiative with a goal that is both simple and transformative: to have every person’s wishes for end-of-life care expressed and respected. Too many people die in a manner they would not choose, and too many of their loved ones are left feeling bereaved, guilty, and uncertain.”
The Art of Dying Well by Katy Butler
“But given that most people nowadays decline slowly, a good end of life is rarely the result of one momentous choice. It’s more often the end point of a series of micro-decisions, navigated like the branching forks of a forest trail.
I’ve met many other people who’ve agonized over similar micro-decisions, such as whether or not to allow treatment with antibiotics, or a feeding tube, or a trip to the emergency room, for a relative with dementia.”
Dear Medical Advocate – A letter by one who has dementia; a letter written by Katy Butler that acts as a template for letters one might write to family members or care providers and can be attached to one’s Advance Directives in anticipation of dementia. (Mine’s in process)
Healthcare Proxy – how to choose and be one – “The Goldilocks Story” is perfect! From the husband who says “I will never unhook you”, to the son who says “I will never hook you up”, to the daughter who says ” I hear what is important to you, mom, and I will follow your choices”.
Advance Directive – California – A general term for any written healthcare instruction specifying your wishes and/or naming a proxy. Access your state’s form online.
POLST form – Provider Orders for Life-Sustaining Treatment; to be applied when closer to dying