How to Initiate Goals of Care Discussions With Family

?Initiating a goals of care discussion with family members or professionals ensures that your wishes for daily living and eventual care needs are planned and executed according to your wishes. While many adults set these conversations aside until a health diagnosis or other situation occurs, having goals of care discussions early in life allows more effective planning.

Why Have Goals of Care Discussions With Family

If you are an aging parent who expects your adult children to care for you when the time comes, these discussions are critical. In my meetings with aging adults, many parents say their children will care for them. However, few have asked the question.
My advice is to ask early and to be practical. Sometimes, individuals and families fail to initiate conversations because they fear others will not meet their needs.
  • Adult children invested in building a career, married, and have children may have little time to care for you.
  • Some parents do not want to burden children building their own lives with caregiving responsibilities.
  • Other parents expect that children will care for them, fail to have discussions, and are disappointed when their expectations are unmet.
  • Then there are situations where adult children and spouses accept care responsibilities only to experience burnout or their own health issues and unintentionally neglect the care of a loved one they committed to care for until the end.
  • If you are single or a solo ager as the result of death or divorce, plan of care meetings are even more important.
If you are an adult child, initiating conversations with aging parents who may not have goal-of-care discussions on their radar can level potentially unrealistic expectations.
But with health problems seeming so far into the future, how do you know what to discuss and what potential scenarios to consider?

How to Initiate Goals of Care Discussions With Family

Beginning the conversation may be as simple as saying, “If something happens to your health, I’d like to know what matters to you.” Statistics confirm a large percentage of adults over age 50 feel people who care for them must understand what matters.
Yet few families initiate or know how to have these conversations.
In my experience as a professional fiduciary, care planning involves three areas: healthcare, financial, and legal. When families lack experience across these domains, creating a plan without knowledge of contextual situations, “what happens if or when” can be difficult.
If adults are healthy, it can be difficult to understand the physical and emotional challenges of being diagnosed with cancer and deciding to pursue chemotherapy and radiation.
Additionally, being diagnosed with dementia or Alzheimer’s can be frightening if no one in the family previously had this diagnosis. The choice to have dialysis if kidneys are failing is another significant decision with long-term considerations.

Counseling on Aging Supports Goals of Care Discussions

Counseling on aging with a professional fiduciary can be an excellent first step. These meetings help individuals create a step-by-step approach to planning health, financial, and legal plans to discuss within the family.
Consultations include discussing family and individual health history, health habits, and financial and legal planning to determine what matters.
Financial discussions revolve around future care costs and whether there is a current plan to pay for these costs. If no plan exists, early discussions allow time to save for costs not paid for by Medicare or health insurance.
One of the more difficult discussions can be identifying legal representatives to serve as power of attorney agents for money and health. In addition, it is important to consider who will be the personal representative of an estate or trust.
Individuals may lack trust in family members or have no friends willing to serve in these legal roles.
In these situations, appointing a power of attorney advisor or protector can alleviate concerns of trust with family members or the willingness to accept agent responsibilities.

Why Individuals and Families Delay Goals of Care Discussions

When one is healthy, busy, and juggling other aspects of life, thoughts of discussing and planning for aging and health problems seem far off in the future. “I have other priorities right now.”
  • Time passes, an event happens, and the clock can’t be turned back. It’s too late for preventative actions that could have been implemented.
In other situations, there is a lack of context. Planning for unimaginable situations is a low priority. “When something happens, I’ll deal with it.”
  • Individuals and families react in crises and make poor decisions that cannot be reversed when the unexpected happens.
Then, some families and cultures resort to denial: “If we don’t talk about it, then it doesn’t exist.”
  • Denial in families is challenging. Individuals who need care and their families are robbed of opportunities and choices that disappear without discussion and the passing of time.
  • This is most common in situations where an elderly loved one is diagnosed with dementia, and no one initiates goals of care discussions.

What Does Goals of Care Mean?

Goals around care are contextual.
  • Healthcare systems look at care goals primarily from the perspective of health. Many relate these to palliative care or end-of-life planning.
  • However, there is a great deal of other planning specific to paying for care and navigating legal matters that are not related to immediate end-of-life care planning.
Goals of care can be simplified down to the basics of what matters to you.
Here is a list of three simple topline questions to identify the big picture of what matters.
  • Where do you want to live and receive care?
  • Who will be your caregiver or legal decision-maker?
  • How will you pay for care not supported by Medicare?
Beyond these questions, my consultations focus on health, money, and legal wishes.
The earlier in life these questions are considered, the more time there is to create a thoughtful plan. Thoughtful plans include what can be done today to ensure that future steps focus on what matters.

Consider Scheduling a Goals of Care Discussion Today

Many individuals have lofty retirement dreams of traveling and spending time with family derailed by job losses or layoffs, health diagnoses, and other unexpected events. Initiate a goals of care discussion with elderly parents or adult children today.
If you are a caregiver or a person managing your own care, unsure how to begin and you want to live your life to the fullest, consider a consultation to frame the context around goals of care discussions for you or your family. You can plan for the expected and have a backup plan to address unexpected issues that may be difficult to imagine.
Are you interested in learning how to initiate goals of care discussions within your family and developing a contextual plan for your needs?
©2024 Pamela D Wilson, All Rights Reserved.

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