“According to a 2017 Kaiser Foundation study, seven in 10 Americans hope to die at home. However, half die in nursing homes and hospitals, and more than a tenth are cruelly shuttled from one to the other in their final three days.”
We hope to die in our own beds, at home, surrounded by those we love, relatively pain free and able to say our goodbyes with dignity. However, this is rarely achieved. Pain is a major barrier to death and nearly half of Americans die without the medication that could ease their pain. More than a quarter of Medicare members cycle through an ICU (Intensive Care Unit) in their final month. That is where a fifth of Americans pass away.
Of the hundreds of people who were interviewed for the article, as well as experts in end-of-life medicine, many offered steps that individuals and their loved ones can take in an effort to die in peace.
What does a good death look like to you? Most people worry about having their families burdened by the financial weight of prolonging their life, or by having to make tough medical decisions. Living as long as possible, is at the bottom of most people’s preferences. Imagine what you would want to happen and then plan backwards. Advanced medicine is geared toward technology and prolonging life. The first choice of doctors and hospitals will be to do whatever can be done to maintain life, so you’ll have to be very clear with your family and your estate planning attorney about what you want. Put this in an advance directive. Select someone who has nerves of steel and can advocate for you, when the time comes. This person may not necessarily be a family member — they may be too emotional in a crisis to follow your wishes.
Take charge of your death. Your doctor should be curious about what you want and be willing to listen. If that’s not how your doctor works, you may want to find another one. One woman was told to undergo a series of severe treatments for a stage four cancer that would not have cured her. She made the decision not to continue with that doctor but found one that asked her, simply, “What do you want to accomplish?” In the past eight years, she has lived her life on her terms, relies on a daily pill and a one-time radiation treatment to eliminate pain from the cells that have moved into her spine. She focused on her quality of life.
Understand the path of your diagnosis. Ask your doctor to create an illustration of how you might feel and function during your illness and treatments. A visual will often give you more information than a series of numbers. A sketch may help you understand the start of a precarious health stage when care moves from curing to caring and comfort.
Two of the best deaths studied involved people with little savings, and some of the worst were experienced by people with endless assets and connections. There are government programs for low income people and programs for home care to relieve family caregivers.
Find your tribe and arrange for caregivers. Dying at home takes work. Hospices may provide visits from nurses and other professionals. However, friends, relatives and hired aides will be the ones undertaking the difficult tasks. This doesn’t take training — it takes emotional strength and a willing spirit. One person will be needed to take charge, with a group of part-timers — as many as can be gathered. Having a deep bench of committed friends and family members spreads the care, so no one person is overwhelmed.
Take control of the room. You can’t have candles when oxygen is in use, but there’s a lot that can be done to transform a room to make it more comforting. Turn a window shelf into an altar for flowers, have family photos or religious objects in eyesight. Use electric LED candles to create a sense of a sacred space. If technology isn’t necessary, ask for the removal of machines that beep and tweet.
Remember the role of death. Culturally, we have pushed death away for the last century. However, our ancestors relied on rituals and customs to ease the pain for survivors and those who were passing away. Don’t reduce the end of life to a series of medical processes. Those who contemplate their own mortality and aging, often live better lives and experience better deaths than those who don’t.
Reference: The Wall Street Journal (Feb. 9, 2019) “Preparing For a Good End Of Life”