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End of Life Stories

Without Advance Care Planning - What would you want for yourself or a loved one?


Sarah, Without Advance Care Planning

Sarah wanted a peaceful death at home, pain free, with family and friends nearby. Yet, she never talked about this so no one knew her wishes.

Sarah had no Advance Directive stating her values and preferences for how much or how little medical care she would want at end of life. Sarah never named anyone to speak for her if she were unable to speak for herself. Sarah never said what would be the least acceptable quality of life she would ever want to endure. Sarah never wanted to be dependent on others for care.

When Sarah was admitted to the hospital after having a severe illness, the doctors knew her chances of recovery, and even survival, were slim. The doctors knew she would need "total care" 24 hours a day at home or in a nursing home.


upset family

They also knew her quality of life would be lessened if she survived. She would not be able to recognize loved ones, walk or talk or do anything for herself. The doctors turned to the family for direction on how much care to provide to keep Sarah alive.

The family had to guess. They questioned their decisions for the rest of their lives.

If you had a life-threatening illness what would you want for yourself?
What would your family want for you? How do you know?

Fact:

When spouses and doctors were surveyed as to what medical care, what values and quality of life the spouse or patient would want - even those who have known the patient for decades - they got the wishes wrong 50% of the time!


John, Without Advance Care Planning

John had an accident and ended up in intensive care. Sadly, his brain was catastrophically injured, and he suffered "brain death". John would not survive. John's body was being maintained by a breathing machine and many other medical interventions temporarily.

The doctors and nurses talked to his family about organ donation as John's heart, lung, liver and bones were healthy enough to help someone in need.


Man and his family at the beach

John wanted to be an organ donor but his family was having a hard time accepting this as he never got to advise them of his wishes prior to the accident. John had tried to talk to his family about his values and his goal to help others but they kept shutting down the conversations as so many families do.

John's family had difficulty accepting the idea of organ donation as the crisis was sudden. Yet, a decision needed to be made within days after the accident for the organs to be viable.

How could John's wishes have been better conveyed?

Compassionate Conversations LLC provides education, techniques, support and intervention when needed in having important, albeit difficult, conversations that express wishes and values. My goal is for you to have your wishes heard, respected and honored.

With Advance Care Planning, wishes are identified, communicated and honored

Bess, With Advance Care Planning

Bess knew her illness was progressing and she would eventually die from it.

Bess wanted her family to have all the support available in facing the changes in her life and theirs too as caregivers. She also wanted information on payment resources for this help. Bess brought her key family members in to see me so we could talk about their situation and learn how to navigate the healthcare system, learn about resources for having a peaceful death, and receive support for her loving family.


Couple talking over coffee

In two hours we discussed Beth's situation, looked at the strengths and limitations of the family, their concerns and needed resources and addressed the emotional side of things.

Bess and her family engaged in two easy exercises to identify her value and goals for her self-identified quality of life at end of life. Bess wanted her family to listen, understand, and honor her wishes. The family wanted to understand these important things too. They learned about home health, private duty resources, hospice care, and how to get durable medical equipment life walkers, wheelchairs, a bedside commode and a hospital bed.

We also identified questions that Bess had for her physician. I helped sum up and write out the questions in a succinct manner so Bess's conversation with the doctor would be effective and efficient.

Both Bess and the family received a lot of emotional support and the opportunity to voice their concerns and continue follow up contact as needed. They left feeling informed and empowered with resources, and increased understanding of what is important for Bess's self-identified values and quality of life at end of life.

Bud, With Advance Care Planning

Bud's family was at odds a lot of the time. His family of independent thinkers made for interesting and sometimes chaotic family life. Most everyone had differences of opinions on every topic, including goals for Bud's care. And some family members did not even like the others. Past history left ruptures in the family.

Sadly, Bud's life was coming toward an end.

He wanted help to get everyone "on the same page" in regards to his needs and wishes. And he needed help to get this done.


Man and family

I met with Bud and two other like-minded family members to discuss his wishes for care at end of life. Bud felt heard and supported.

He also shared the concerns he had about the others in the family, including the challenges he anticipated. I listened and took notes - and educated him on the Patient Right to Self Determination. He felt empowered.

We worked on structuring the next session with the other family members: how to express his wishes expectations for the family to listen, understand, respect, and ultimately honor his wishes as his health declined. Bud asked questions about care-giving resources available to him to help supplement what his family could do.

We met with others in Bud's family. We set the stage for the evening, giving direction for the discussion, welcoming everyone's input but holding Bud as the person in charge. He spoke and they listened. His wishes were made known. He took questions and provided answers, showing is strength and leadership in the family.

For those family members who lived out of town, or who could not attend - especially those with the strongest negative opinions - I joined Bud on the speaker phone in a private setting so Bud's wishes could be made known. They could give feedback and we would provided additional education as needed.

Bud felt empowered and supported and knows he can call me again as situations arise.


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314-412-6515
spekios@cconversations.com
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