Decisions related to eldercare for a failing parent can be among the most wrenching and potentially divisive any family can make.
In early August 2000, our mom was living independently in her home but experiencing worsening cognitive decline. My six siblings and I were unsure about what to do.
At a family party, my brother-in-law cornered me. You’re in the business of collaborative decision-making, he said. You need to step up and help the family agree on a plan before something happens.
Overview of our eldercare decision process
Within days, I shared in a memo to my siblings and their spouses the following collaborative decision process and schedule:
|August 8 – 17||Review and respond to scenarios and draft decision criteria|
|September 2-3||Add new or modify proposed scenarios in order to create a set of discrete options|
|Finalize and weight decision criteria|
|Apply decision criteria to the final scenario options|
|Select best option or create a new or hybrid option|
|Move to consensus on selected option|
Decision process assumptions
In the same memo I shared the following assumptions about the decision process:
- There is no perfect solution to this challenge — that is, no solution to this problem is without risk to mom and the family. So, in the worst case, we place ourselves in a “damned if you do, damned if you don’t” or an “I told you so” position. In the best case, we go into this assessing risk as best we can with the information we have, making an informed decision, accepting the calculated risk inherent within that decision, and preparing for contingencies. (Risk can include physical, emotional and psychological risk to mom.)
- We all need to improve our knowledge of the situation and the possible options. The chance of conflict diminishes as the information base we share grows.
- Although this is a very emotional issue, we will make a better decision if we proceed rationally to the degree that is possible.
Researching the eldercare scenarios
I tasked the group with emailing me their decision criteria. Also, I seeded the group with three scenarios, which I asked them to evaluate and extend.
|Scenario #1:||Move mom to assisted living facility within 90-150 days|
|Scenario #2:||Leave mom in her home indefinitely before moving her to assisted living center or nursing home when required by circumstances such as a fall|
|Scenario #3:||Move mom to assisted living facility or nursing home in 15 to 30 months|
But I had an immediate challenge. Two siblings were digging in to diametrically opposed views:
- Sibling A believed mom must remain in her home and not move into an assisted living facility under any circumstance
- Sibling B believed she must move in to an assisted living facility and not remain in her home under any circumstance
To unlock each from their increasingly entrenched positions, I assigned Sibling A the task of finding an assisted facility that he would be comfortable moving our mom into if that were the ultimate outcome. I assigned Sibling B the task of articulating all the requirements (renovations, in-home care, etc.) she would require to be comfortable having our mom remain in her home. This turned out to be a key to the success of the decision process design.
Weighting the criteria
On Labor Day weekend, we came together in my sister’s living room. All siblings were there as well as two of our in-laws. First we used used radio response keypads (a precursor to Prism’s group decision support system) to complete a paired comparison analysis and weight the criteria. Below are the final decision criteria with their numerical weights.
56.66 Sense of Independence/Well-Being: Will the solution tend to increase or decrease mom’s satisfaction with the diminishing returns of daily life and her self worth?
54.41 Belonging/Community: Will the solution sustain a sense of belonging to mom’s established community?
54.00 Medical Supervision: Will the solution provide adequate attention to accurate medications, hygiene, toileting, and ambulation?
52.70 Socialization/Structured Activities: Will the solution provide adequate socialization and structured activities and prevent extensive periods of isolation?
51.42 Emotional Disruption: Will the solution be in familiar surroundings and minimize the likelihood for additional disorientation and deterioration?
40.51 Nutritional Adequacy: Will the solution provide mom with nutritious meals and ensure a healthy diet day-to-day?
2.36 Transition: Will the solution ease mom’s transition into the next phase of her care?
Presenting final options
My siblings then shared their research so that we could all understand objectively the trade-offs inherent in the five final eldercare options:
- Move in with my brother and his wife in Canandaigua, NY
- Remain in her home in Buffalo, NY
- Move in to Bristol Home
- Move to the Weinburg Campus
- Move in to Elderwood at Glenwood Village
Assessing final options against weighted criteria
We used the group decision support system to complete the weighted criteria assessment. This produced some instant humor. One sibling, a lawyer used to an adversarial environment where “gaming” for an advantage is expected, was unprepared for the transparency of this collaborative decision process.
First some context. My sister-in-law is a gourmet cook. Family lore has it that my brother has never ventured off to work without having first enjoyed a hot breakfast. The very first matrix “vote” was how well option #1 (moving in with my brother and his wife in Canandaigua, NY) would contribute to the nutrition criterion. The question and anchors on the 9 point scale were very specific:
Will the solution provide mom with nutritious meals, optimizing her overall well being?
9= home-cooked, varied meals; served in a pleasant setting
5= TV dinners with little variety or interest in preparation
1= canned/packaged foods
Immediately, everyone started chuckling. We’d all enjoyed our sister-in-law’s delectable meals. Clearly, this rated a “9.” Unfortunately, for my brother the lawyer, the decision system has a “consensus” threshold. If it’s not met — that is, if the voting shows a lack of agreement — a histogram pops up to display the range of votes.
That histogram did indeed pop up on the display: there were seven votes of “9” and one vote of “1.” My gourmet chef sister-in-law turned to my lawyer brother and exclaimed, Really! After some nervous laughter, we’re-discussed the criteria and evidence. Upon re-vote, we still didn’t get a unanimous “9” prompting more chuckles.
We continued voting until we had assessed each option against each criterion. The first table below shows the average of the raw scores in each cell; the second, the weighted scores. Each includes the total weighted score.
Reaching consensus agreement
After reviewing the results of the multi criteria assessment, we converged on a hybrid solution, which is outlined below. In early August there appeared little chance we could come to strong agreement as a family about the difficult eldercare decision we faced. However, after a month of good faith preparation and one afternoon of collaborative decision-making in my sister’s living room, we reached a powerful agreement.
Our final task was to poll the degree of support for the final plan. We used a standard consensus scale where
- Can NOT support
- Still have questions
- Can live with/will publicly support
- Strongly support
Everyone voted “5 – strongly support.” It was unanimous. We had achieved the strongest possible consensus.
Our unanimous hybrid eldercare solution
Below are the final components of our decision:
- We recommend to mom that she move to Elderwood at Glenwood Village as a first option.
- We encourage her to consider moving to Canandaigua as a second option.
- If she prefers the Bristol Home,
- We encourage multiple visits to Elderwood Village at Glenwood with each member of the family with the goal to make distinct comparisons to the Bristol Home.
- We help mom make a simple checklist to make the comparison: private bath, meals, access to her church, etc.
- Use mom’s next visit to Canandaigua to give her an idea of what life would be like there.
- We nurture mom by discussing our criteria and why we believe she should consider the Elderwood at Glenwood Village over the Bristol Home.
- We agree that she should make a decision by Thanksgiving with a move by January but we will not give mom a deadline.
- Once she makes a decision, we implement a series of decisions, such as putting the house up for sale, etc.
- Contingency: if she were to move to Bristol Home, she can always move out.
Late that September afternoon, everyone left our sister’s living room smiling, grateful and aligned. With our relationships intact or strengthened, we had made an informed, collaborative decision and we were confident it was the best possible decision under difficult circumstances.
The hybrid solution continued to evolve. Our mom moved into Elderwood at Glenwood Village and spent extended visits to my brother’s home in Canandaigua, a perfect example of both….and decision-making. She spent her final weeks with my sister and brother-in-law at their home in Amherst, NY where she passed away in peace on October 27, 2002.