The New World of Planned Death
By Marilyn L. Pinsky
“Death is the most human of all experiences that most people don’t like to talk about,” says Ron Hammerle, Ph.D., a former healthcare executive who has taught in graduate schools of medicine, law, business and pharmacy for nearly 50 years.
The founder and later chairman of Health Resources, Ltd., Hammerle became nationally-known as a leader in healthcare strategy, management and marketing.
His career in working with Fortune 500 companies, hospitals and clinics on their healthcare systems put him in the forefront of changes that have come to fruition.
What follows is a Q and A on one of the topics he is now focused on, planned death.
Q: What is a planned death?
A: Planning your death is simply making plans for how you would like to die. We make plans for dying when we execute our wills, do financial planning and purchase life insurance. Planned death is just another part of that process.
Q: Why are we hearing more about this topic lately?
A: It is generational. If you became of age in the ‘60s, you are part of an age cohort that has a history of effecting change and wanting to control personal decisions in many areas of life. In New York, an early example involved the legalization of elective abortion in 1970.
A bit of history. Dying has always been a part of medicine, but it was Derek Humphry’s 1981 book Final “Exit, The Practicalities of Self-Deliverance and Assisted Suicide for the Dying,” that really signaled the beginning of the modern death with dignity movement in the United States. Combined with Elizabeth Kubler-Ross’s earlier book “On Death and Dying,” the 1971 introduction of the hospice movement in the United States and the headline making activities of Dr. Jack Kevorkian, the subject of death became more culturally acceptable to talk about.
Q: Can we legally plan the time of our death in the United States and in New York state in particular?
A: Though there has been proposed legislation in New York to that effect for 10 years, it has never become law. But regardless of where you live, you can still plan your death, though you may have to travel to implement those plans. For instance, Oregon has had legally enabled medical aid in dying for 40 years. More recently it has become legal in California, Maine, New Mexico, Vermont, Washington, Colorado, Montana, Hawaii, New Jersey and Washington, D.C. Delaware is the latest state to have passed enabling legislation, but a previous governor vetoed it.
Even with these enabling laws, obtaining medical aid in dying is often challenging in the United States. Many who seek it do not qualify because of multiple medical and legal restrictions. If you are able to travel and have the economic resources, Switzerland is frequently the destination of choice, unless you are a resident of Canada.
In 2015 the Canadian Supreme Court unanimously ruled that a legally competent citizens of Canada have a constitutional right to physician aid-in-dying if they “clearly consent to the termination of life and have a grievous and irremediable medical condition, including illness, disease or disability that causes enduring physical or psychological suffering that is intolerable to the individual in the circumstance of his or her condition.” Doctors and nurses now involved in end-of-life care, including medical aid in dying (MAID), follow clinical guidelines and legal regulations.
Q: I am curious if the fact that science is keeping us, or at least our bodies, living longer but at the same time we are experiencing an increase in dementia that can go on for years, is also a reason why this topic is becoming spoken about more?
A: Yes, it is. Most people don’t want to die in pain or live forever with memory loss, few in the United States want to bankrupt their families when there is no longer a cure or any hope of a quality of life.
Q: I know we should all have advance care directives, those legal documents that allow a person we’ve chosen to carry out our wishes regarding future medical care and to make medical decisions for us if we become unable to do so. (Having done mine years ago, I asked Hammerle if that would be enough.)
A: The first thing to consider is sitting down with your children or your healthcare surrogates to review your advance care directive, so they know what you want in the event you cannot speak for yourself. It would be ideal to record or video your wishes, so if there is ever a question, it would be you speaking for yourself.
People’s lives change and you have to make sure your advance directives reflect your current situation. For instance, is your healthcare surrogate living in the same area you are or have one of you moved? Are their beliefs still aligned with yours? Will they honor your choices, no matter what they feel personally?
If that person is not available, do you have a second choice who understands your wishes, is legally on your form and can easily be reached if a decision needs to be made quickly?
And there are other considerations. Do you know the policies and beliefs of the hospitals where you may go? Are they locally owned and by whom? Are they investor owned? Do you know if their policies allow your wishes to be carried out? A substantial percentage of hospitals are run by religious organizations that will not honor medical aid in dying choices and they often manage hospitals that do not bear their names. These same issues also apply to independent living, assisted living and continuing care facilities, where you might reside.
In the last few years the practice of medicine has changed immensely. Now, most physicians in urban areas are employed by hospitals. Depending on the hospitals’ philosophy, a recent study by John’s Hopkins found that a significant percentage of advance directives are not honored. This is where you and your chosen healthcare surrogate have a difficult and important role. You may need to assume the roles of an aggressive plaintiff’s attorney and fight for what you put into your advance care directive. These are things you need to take into account in talking with your family and choosing a healthcare surrogate.
Another issue that might arise is whether the hospital is a teaching or research hospital. There is a distinct possibility that a doctor in that type of hospital may say to you, your family or your surrogate: “Even though there are no proven treatments for patients with your condition, we have several things we’re testing that might help. Wouldn’t you like to try one?” Or: “We know it may not help you, but don’t you want to help someone else by trying it?”
What would you or your surrogate do in these situations? One question you might ask the doctor is “What would you really choose for yourself, knowing what the odds and side effects are?”
Online Resources
Ron Hammerle, Ph.D., recommends two decision-making guides. One is called “Five Wishes,” and it can be found at https://fivewishes.org. The other may be found at Compassion and Choices, https://compassionandchoices.org. Both include a series of choices to help you answer these questions:
Wish 1: Who you want to make healthcare decisions for you when you can’t make them.
Wish 2: The kind of medical treatment you want or don’t want.
Wish 3: How comfortable you want to be.
Wish 4: How you want people to treat you.
Wish 5: What you want your loved ones to know.