Barbara Coombs Lee, President of Compassion & Choices, explains why patients should have the right to plan their end-of-life experience. Click here to read an editorial by Ari Ne’eman, a Member of the National Council on Disability, on why death on demand puts our society at risk.
Elaine Spence’s parents were both past 90. Her father suffered from spinal stenosis; her mother had lost mobility. For both, dementia was beginning to affect the quality of their days. They talked to Elaine about wanting to bring their lives to an end. After speaking with a Compassion & Choices End-of-Life counselor, she found what she needed most: someone who would listen. She got honest, judgment-free answers about their choices.
When we remember loved ones who have died, no impressions are as poignant as those of their last days. After they are gone, and we gather memories, we harvest what has been sown. We must sow compassion and understanding, not fear, as we plan for the end-of-life experience our loved ones would most desire and we would desire for ourselves.
America’s reluctance to accept death means we usually respond to dying with overwhelming fear. In compassion, we must honestly listen to what our dying loved one actually wants. Most of us do not want to spend our last days in an intensive care unit hooked up to a bunch of machines with lights and sounds reacting to our bodies’ every change. Sadly this is the death many Americans get, although we wish for something very different. The last memories we hope to create are at home, the home we spent a lifetime creating, the place that gives us comfort and strength. We want to surround ourselves with those who love us, say goodbyes, share stories, and rest in quiet calm.
To harvest that dream, we must plant the right seeds today. If you anticipate having to make end-of-life plans, or know someone who will, here are the things you can do now:
- Talk to your doctor. Talk about what makes your life meaningful. Consider specific conditions, like permanent unconsciousness and terminal illness.
- Fill out an advance directive. Have the conversation. Would you be called on to make decisions for a parent or loved one who couldn’t? Then talk to them about what they want.
- Remember, it’s not as hard as you think, and help is available. CompassionandChoices.org has a Good to Go Toolkit with information, forms and ideas for getting the conversation started.
The most important thing is to listen (and get the doctor to listen!) to the wishes and decisions of a person facing the end of life. Many legal options exist in every state. Compassion & Choices believes in putting information in people’s hands and empowering terminally ill patients with the broadest range of options.
Anyone can decline or discontinue treatment if the burdens outweigh the chance of benefit. This includes decisions about chemotherapy, dialysis, feeding tubes and ventilators. It’s not the doctor’s choice; it’s the patient’s.
Elaine’s parents, Armond and Dorothy Rudolph, died peacefully at home. With information from a Compassion & Choices counselor, and with round-the-clock support of their family and hospice attendants, they voluntarily stopped eating and drinking. A challenging path, but it was the one the Rudolphs decided was right for them.
In Oregon, Washington and Montana, dying patients may openly ask their doctors to prescribe medication they can choose to take themselves to achieve a peaceful death if their suffering becomes unbearable. This option has changed the end-of-life experience there, and not only for the tiny handful of dying people in each state every year who actually take the medication. All those facing the end of life gain comfort knowing they have a choice. The choice empowers people to live their final days to the fullest, in dignity and with peace of mind.
When Oregon’s Death With Dignity law took effect in 1998, physicians started learning more about pain treatment, making more referrals to hospice and improving their ability to recognize depression among the terminally ill. Of all states, Oregon ranks at the top for percentage of deaths at home instead of hospitals. Experts, patients and families all agree conversations about end-of-life decisions have improved.
Opponents of choice put out stories of people supposedly harmed by the law, but facts don’t bear them out. Studies show no factual basis for so-called slippery-slope concerns. Aid in dying presents no risk to people in vulnerable groups. Disability Rights Oregon, an agency that protects the rights of people with disabilities, has not received a single complaint of attempted influence, coercion or misuse in 14 years of the Death With Dignity law.
Legal aid in dying is compassionate public policy for people facing the end of life. We need to replace the cruel framework that exists in the rest of the country, where doctors fear honest discussion with their patients about managing a peaceful death. If patients cannot ask about the option so many ponder as they near death, doctors and family members cannot adequately understand and address their concerns.
Each of us has the responsibility to change that cruel framework. Each of us also has a responsibility to promote advance-planning conversations. And we must create the expectation that every treatment decision is informed by knowledge and comparison of all possible options. The Heights of Compassion, Bridges to Choice conference in Chicago June 28-30, 2012, is an opportunity to join in lighting the way to liberty at the end of life.
We dream of a time when all Americans can live and die as free people. The seeds we plant today are not just for ourselves. Everyone who follows after us will live in the society we make and with the choices we protect for others. Each candle we light in remembrance of ones who died in dignity and according to their own values brightens the torch of liberty burning across the nation.