At some point, each of us will be forced to face the end of life, whether that of a loved one or, inevitably, our own. Over the many years we have supported clients and their families during this transition, and despite the sadness that is always present, we have been able to experience a feeling of contentment when we know a passing was peaceful and suffering was minimized.
Rarely, however, does this happen by accident. Rather, the families and individuals that experience the greatest end-of-life “success” do so as a result of having certain elements in place.
Planning
Health care proxy. An individual designated to make healthcare-related decisions, in the event you can no longer make them for yourself.
Living will. Whether in writing or said out loud, a living will is a guide to your end-of-life wishes, so that your health care proxy can make decisions with your goals in mind.
These wishes are often very specific to the individual. For example, one client said that if he could no longer eat food that was of regular consistency (i.e., his food needed to be pureed or he needed to be fed through a tube), he did not want to live. Another client stated that as long as he could still enjoy watching the Boston Red Sox, he wanted his family to do everything to keep him alive, including having a breathing and/or feeding tube.
Power of attorney. This designates an individual to make financial decisions on your behalf, in the event you can no longer make them for yourself. This is important because the care required to achieve an individual’s goals about how and where they want to die sometimes necessitates spending money.
For example, if a person wants to die at home and that requires someone beyond a family member to physically care for them, then professional caregivers must be hired and paid for.
Communication
Continuous, persistent, and assertive communication must occur among all involved.
In one client situation, a woman demonstrated through her actions a desire to cease curative healthcare and, instead, end her life. That required an honest conversation with her husband and me about changing her care approach to one that eased both her physical and emotional suffering. To honor her wishes, this had to be communicated to her primary care physician. I was heartened when he listened intently, asked great questions, and completely aligned with all involved by quickly getting a hospice team in place to support her and her family.
Collaboration
When spouses, siblings, and adult children engage in the care of a dying individual, the degree of understanding among all involved can make a dramatic difference in how tactics to support the dying individual’s goals get carried out.
Often, there is one individual in the family who has taken on more responsibility than others to care for the declining family member. In most families, we see a recognition of that fact and a deep appreciation.
When that does not occur, the resulting struggle can prevent the wishes of the dying individual from being honored. Facilitated family meetings that begin with a discussion of the individual’s clearly articulated goals are the best place to start to resolve conflict.
How We Help
When we are invited into this most intimate place in the lives of our clients, we find ourselves doing the same things repeatedly.
First, we help the individual and family articulate, out loud, their goals. What we most often hear is:
- A minimization of suffering
- The ability to die peacefully and comfortably
- The ability to die with family and friends present
Second, we encourage all involved to continuously reiterate these goals out loud. This should be done at every decision point, especially when interacting with members of a healthcare team in an acute care hospital.
Some examples where clearly articulated goals made a difference…
#1. A recommendation of brain surgery to treat a condition that was a side effect of treatment for an incurable disease.
We asked…
Will this decision to move forward with surgery result in further suffering? Will this decision contribute to an eventual peaceful and comfortable passing? Could this decision result in them passing alone?
#2. Continuing to pursue diagnostic testing that prohibited medicating an individual who was so agitated he had to be restrained.
The family asked for an emergency meeting with the physician in charge so the dying individual’s wife could articulate her husband’s goals, including his desire for a peaceful passing with minimal suffering. Her assertiveness led to a swift change in the treatment plan.
#3. Whether to bring a dying individual to an acute care hospital for additional treatment.
Families ask: “Do we transfer our loved one yet again to an acute care hospital for curative interventions, despite the suffering they endure each time this occurs?” When the decision is no, hospice intervention is most helpful in support of the goal to keep the loved one at home.
Summary
I so look forward to the holiday season and the chance to spend amazing time with family members across the age spectrum, including our five precious (and perfect) grandchildren between the ages of 7 and 19 and my parents who are 89 and 90 years old.
As you celebrate the holidays with your own loved ones, please remember that we never know when end-of-life decisions may need to be made. If conversations about this topic have never occurred in your family, we encourage you to seize a quiet moment at this time of year for a discussion about planning, goal setting, and communication.