EndWell Advisors

Our Origin Story
by Endwell founder Dr. Terri Daniel

 

Recently I was on a plane returning from a hospice conference, and the woman sitting next to me (after asking what I do for a living), told me how overwhelmed she was after her husband died. She was part of a large family and an active social circle, so a formal memorial service was expected, followed by a post-service gathering.

"I was barely able to breathe or put one foot in front of the other," she told me. "The last thing I wanted to do was plan a party."

I immediately thought to myself, I could have planned that for her, and officiated the memorial too.

In addition to facilitating dozens of funerals in my career as an interfaith hospice chaplain, I'd also been a wedding officiant and planner for 30 years. I could have helped her with not only the memorial, but with countless other tasks related to her husband's illness and death. I'd also been teaching a workshop called Making Peace with End-of-Life for several years that covered all this and much more.

Why not take all that knowledge and experience and turn it into a consulting service?

What Are Those Tasks Exactly? 

I'm going to introduce you to a fictional character named Dorothy. She is a composite built upon dozens of true stories from real people I've encountered throughout my hospice and counseling career. Dorothy's story illustrates the whole spectrum of challenges one might face when confronting illness, disability, aging or end-of-life.

Dorothy and her husband Bill are in their mid-70s. They are financially secure, politically moderate, and non-religious. They were careful to prepare a will to determine how their assets would be distributed to their three children. Dorothy and Bill assumed that because they are married, they would automatically have decision-making power for each other's medical care in the event that one becomes incapacitated. They both know that the other would not want to be "kept alive by machines," so never felt the need to put it in writing. They never discussed end-of-life with their children because it never felt like the right time. It was so rare for the whole family to get together for birthdays or holidays, and they always have so much fun together, why ruin it with such a morbid conversation?

 

Dorothy and her three children

What Could Possibly Go Wrong?

Lots of things, and I've seen them all. Here are just a few scenarios:

 

1. Bill and Dorothy's 35 year-old daughter sustains a traumatic brain injury in an auto accident. She is a single mother with a seven year-old son and a house with a mortgage. Fortunately, she earned a good income at her high-level job, and had savings and investments. Unfortunately, she never designated anybody to be a signer on any of those accounts, so nobody could access her money to pay for her care, her house payments or her son's private school.

 

2. Bill is diagnosed with cancer and is interested in learning more about Medical Aid in Dying (MAID), which is legal in his state. Dorothy supports this, but they are uncomfortable discussing it with the children, knowing there will be opposition. They also don't completely understand how it works, and wish they were better informed.

 

3. Bill's oncologist tells him about wonderful new treatments and clinical trials, but Bill wants to learn more about hospice care. Can he be on hospice and also have these treatments?  Can he still be on hospice if he opts for MAID? The oncologist isn't sure.

 

4. Bill goes into hospice care, and although he is not religious, his oldest son Mark, who is an Evangelical Christian, pressures Bill on his deathbed to convert and be saved before he dies. This causes stress and conflict for the whole family.

 

5. Because Dorothy and Bill were not religious, they didn't have a minister to officiate Bill's funeral, or any idea what kind of content to use for the service, considering the religious divisions in the family.

 

6. Three years after Bill's death, Dorothy develops dementia and is moved to a memory care facility. She also has life-threatening medical issues, but never filled out an advance directive, so her wishes for end-of-life care have not been recorded. Now because of her cognitive impairment, she is legally unable to do so. If she ends up on life support, the decision-making power generally goes to the adult children, but it varies by state, and what if the children don't agree on a course of action?

 

7. Prior to Dorothy's decline, she was living in the 3500 square-foot house that she and Bill shared for 40 years. In order to pay for her care, the house has to be sold, and 40 years of accumulated belongings must be removed. After Bill's death, the children pleaded with Dorothy to sell the house and move to a smaller place, perhaps a retirement community where she could make friends and engage in social activities. Although Dorothy agreed, she never felt ready to do this, and thought there was plenty of time. Now the burden falls to the children, and the need is urgent.