A room full of people gathered with one thing in common. Every one of them has a loved one with dementia. Looking for answers, they took action and attended a series of seminars presented by Dr. Rollin Wright, a geriatric medicine specialist at Penn State Health. https://www.agefriendlycare.psu.edu/profile/rollin-m-wright
These family members learned what happens in the brain of a person with dementia. They learned about the stages of dementia and how their loved one will lose certain abilities as the disease gets further along. The family members learned how to provide effective care and support. When the final seminar addressed the issue of planning for the future, Dr. Wright asked an unexpected question.
“How does an old lion die?”
Dr. Wright described the mighty lion that chases down a gazelle and muscles other predators out of the way for the meal. This is how most people think about lions. Strong, fierce, exercising total control over its surroundings. How such a mighty creature gets old and dies never enters the mind of most people.
An image flashed on a large screen in front of the families. The large old lion stood by itself. The lion had literally lost its pride. Its ribs were showing clearly. Dr. Wright explained that an old lion gets arthritis in its joints. It no longer has the strength or speed to catch its prey. Slowly the lion becomes malnourished. The lion grows weak and dies. This, Dr. Wright explains, is a natural death.
We humans reach a similar point in life. We develop problems with swallowing. Our bodies no longer absorb nutrients that are necessary for good health. A person with dementia may be otherwise healthy for a period of time. How do we think about a natural death as the systems of the body stop working as they once did?
Dr. Wright raised this question so that the families gathered in the room would start planning. We all tend to focus on ourselves and our loved ones in the prime of life. We are mighty lions, and no one likes to think about the lion slowly growing weaker. But the last stage of life is coming for us all.
The families gathered in the room learned about planning for medical decisions that must be made when the loved one with dementia can no longer express a decision. Every person has a legal right to say what treatment happens to his or her body. But the time will come for most people when it is no longer possible to understand the medical options and make decisions. There is a legal document called an “advance directive” to name another person to make these decisions.
The advance directive not only names someone else to speak with the doctor and make decisions, but it also expresses the person’s wishes for care. If the doctors believe the person has reached the point where more medical treatment will not extend the person’s life, the advance directive is where the person can say how treatment and comfort should be provided.
Planning ahead requires thinking about specific situations. If you become the old lion, unable to swallow or absorb nutrients, will receiving food and water through an IV or feeding tube meaningfully extend your life? Studies have shown that artificial nutrition toward the end of life will not restore you to the mighty lion you once were. Dr. Wright suggests that this tube feeding will only prolong discomfort.
The “living will” part of your advance direct will only take effect when the doctors believe you are nearing the end of life or have entered a permanent coma. Recording your wishes for tube feeding now while you are healthy gives you control that you may not have at the end.
One of the most common questions we hear at Keystone Elder Law is whether a person will experience discomfort without food and water. While we are healthy and hungry and thirsty, it strikes some people as cruel to stop giving food and water to a dying person. As we have written in these pages before, the appetite and sense of thirst start to go away as the systems of the body wind down. In fact, providing fluids that the body can no longer process may lead to swelling and do more harm than good.
Knowing the drawbacks of life-extending treatments is an important part of planning for the end of life. If the heart of a person with an end-stage condition stops beating, CPR is less likely to work and it may result in broken ribs. When a person at the end of life is unable to breathe adequately, a ventilator can force air through a tube in the throat into the lungs. Intubation can be uncomfortable and sedation is often necessary.
The take-away for families gathered to hear Dr. Wright speak was to start planning now. Gather information. Make decisions, even if it is not pleasant to think about. You may draw on end-of-life experiences you have witnessed in your family or group of friends. Valuable resources can be found at PrepareForYourCare.org and FiveWishes.org.
You may wish to explore care options that will be available when a loved one’s health declines. Every county has an Office of Aging that can explain resources and programs available to local families.
Of course, your local elder law attorney can provide comprehensive planning for the later years of life. Free online workshops that address the full range of planning options are available here: https://keystoneelderlaw.com/workshops/ The workshops happen weekly and you can attend from the comfort of your home. A higher level of care in the later years of life can be expensive. Elder law planning will shield you from those costs.
You are not alone. As much as we like to think of ourselves as independent, we are all interdependent. With the help of many passionate people in your community, you can be ready for the days ahead when you don’t have the strength of your younger years.
Patrick Cawley, Attorney