We’re all going to die.
That’s a fact few people seem willing to face, according to a show of hands among people who attended a forum on “End of Life Choices & Decisions” sponsored by the League of Women Voters of the Hamptons at the Parrish Hall at Stony Brook Southampton Hospital Nov. 13.
But it’s a fact nonetheless, and how we die is something that few of us give much thought to — until it’s too late for us to make decisions for ourselves.
A panel of end-of-life care experts convened for the evening shared varying approaches to how we deal with our final days, and while their methods differed, the idea of preserving peoples’ dignity at the end of their lives was foremost on everyone’s mind.
Attorney David Leven, the Emeritus Executive Director of End of Life Choices N.Y., provided the details on the controversial subject of Medical Aid in Dying, which is now legal in five states, and which he is working to bring to New York.
The concept of giving a terminally ill patient a cocktail of drugs in order to end their lives was the subject of a great deal of controversy in the early 1990s, when it was often referred to in the press as “assisted suicide.”
“Medical aid in dying is something that should not be considered assisted suicide,” said Mr. Levin. “Suicides are committed by those who can continue to live but chose not to. On the contrary, Medical Aid in Dying is only available to terminally ill patients who will soon die.”
Mr. Leven said the American Association of Suicidology has recognized that people who chose Medical Aid in Dying are distinct from suicidal people in that their choice is a rational one.
In the states where it is legal — Oregon, Washington, California, Montana and Vermont — the choices patients have made since Medical Aid in Dying was first legalized 17 years ago in Oregon have been well documented, said Mr. Leven.
He said only one in 300 people take advantage of the option if it is available to them, and there’s no evidence of coercion or abuse of vulnerable poor or disabled patients to try to get them to take advantage of the program.
“People don’t feel the duty to die,” he said. “Almost all of the people who chose it have health insurance, and most are college-educated. The family members feel better prepared.”
Mr. Leven said he is advocating for the right to chose the time of their death over the agony of wasting away before their loved ones, but said programs such as Hospice do such a good job making peoples’ last days easier that “very few people are going to want Medical Aid in Dying.”
Lara Siska, the director of Palliative Care at Stony Brook Southampton Hospital, said members of her team provide help with relief from both the medical and psychological symptoms patients experience at the end of their lives, as well as supporting family members who are caring for them.
She said, short of Medical Aid in Dying, there are many other major decisions that patients and their families must face.
It starts with having a health care proxy who understands your wishes, something Mr. Leven said people of all ages should think about creating.
“It’s never too early until it’s too late,” he said.
Ms. Siska said choices such as whether to continue life-prolonging medical treatment like ventilators, feeding tubes and using an AED to restart someone’s heart are ones most families need to face as doctors shift the focus of their treatment from curing disease to ensuring comfort in a patient’s last days.
Her team of eight board certified physicians, two nurses, two social workers and a massage therapist works with families on these decisions.
“It’s important to establish goals of care,” she said. “We ensure the patient’s family’s needs are met and provide emotional support, which focuses on the entire person and not just the illness.”
Corinne Carey, the Campaign Director for Compassion & Choices N.Y. talks with people every day about end-of-life decisions. She said she’s currently talking with a friend who just found out she has Stage 4 anal cancer.
“She’s fighting for experimental drugs, clinical trials and treatment, but her options for treatment are going to run out, and when that happens, she wants to know what’s next,” she said. “Anyone has a right to refuse treatment, even life-sustaining treatment. That decision can be made by the individual or a health care proxy.”
But, she said, refusing treatment can be a painful way to die. She shared the story of the husband of a volunteer for the campaign who decided to not eat or drink as he was dying.
“It took him 12 days to die. It was not peaceful, and it was not the death he wanted,” she said.
She told another story of two people in a workshop she ran who each dealt with a family member who died of pancreatic cancer. One attendee’s mother, who lived in California, decided to take advantage of Medical Aid in Dying. She had a party, and her family members said goodbye to her while she was still conscious and then she took the medication and died peacefully.
But another woman in the group, who was from New York, said her husband, who couldn’t take advantage of Medical Aid in Dying, instead tried to kill himself. He had a do-not-resuscitate order and ended up in a coma, while his wife was under suspicion of having killed him because of the way he took the overdose.
Ms. Carey said California Governor Jerry Brown, a practicing Catholic, said when signing that state’s Medical Aid in Dying bill that “in the end I was left to confront what I’d want in the face of my own death. I don’t know what I would do. If this would be a comfort, I wouldn’t deny that right to others.”
East End Hospice President and CEO Pricilla Ruffin said Hospice doesn’t encourage Medical Aid in Dying, but she’d like to “encourage those in need of end-of-life care to come to us sooner.”
She said Hospice care is seriously underutilized, with only one in five patients who are eligible taking advantage of the services, while Hospice never turns anyone away for lack of ability to pay. Forty percent of patients are in Hospice for less than one week.
In the new Kanas Center for Hospice Care in Quiogue, she said, families are in a peaceful setting, where they can devote theirselves fully to saying goodbye to their loved ones, and then walk out to take in the “tremendous pastoral views” surrounding the center before going back in to be with their family members.
“It’s a time to reconcile dying and faith in the meaning of life. A lot happens in that space,” she said. “It’s an intensely personal process, much like the bonding when you have a new baby — intense gazing and looking and loving. All the energy is focused on the one who is leaving.”
“We have an amazing team of professionals and volunteers who carry out this extraordinary work every day,” she said.
Michael Vetrano, the pastor of Southampton Village’s Basilica Parish of the Sacred Hearts of Jesus and Mary, teaches Clinical Ethics and Decision Making and Medicine in Contemporary Society courses at Stony Brook University.
Pastor Vetrano questioned the rationale behind Medical Aid in Dying.
“Does this convey to people that this is awful and not something people should have to go through or want to go through?” he asked. “Death is universal. Are we isolating the dying instead of reaching out and validating that its part of life, rather than a thing we should not want to confront?”
“There is value in what happens as you consider what it is to die,” he said. “The journey is valuable, and not one that ever needs to be escaped.”