Death with dignity

Posted

WESTMINSTER WEST — David Price is dying, but it's not the colorectal cancer he was diagnosed with two years ago that is killing him. Doctors removed the tumor shortly after his diagnosis, but Price believes it's only a matter of time before fate catches up with him.

Rather than let chance decree his date of death, Price, who is a psychologist with an MBA, decided to take the matter into his own hands. About a month ago, he stopped eating and next week, he stops drinking. He expects he will die a week or two thereafter. He faces his death with very little fear and a mental calmness that is peaceful and accepting.

"God has blessed me," he said. "I have always had a deep faith. I know what's on the other side."

Price said he loves the life he has lived, but the current quality of his life was compromised following his cancer surgery. The surgery resulted in having what he calls "a dysfunctional rectum" and as a result, has to use a colostomy bag.

"I will never again have a normal bowel movement," he said. "I will always wear Depends and I will always need to be close to a bathroom. If I can't go to the bathroom properly, that's just not a life."

While Price said he is "supposedly cancer-free," he has been told by his doctors he is at a high risk for a recurrence. "Plus, I have multiple health issues that could eventually kill me, including blood clots and hernias. I have epilepsy and I was falling as often as twice a day due to my medications. If I fall and crack my skull and go into a coma, where am I going to be lying for six years? Not at home. I don't want to be in a nursing home."

He understands that some people may judge his choice to end his life now, and many people have tried to change his mind. Price also acknowledged that while he believes he is making a rational decision based on his spiritual values and ethics, his choice is unique to him and no one else.

Act 39

In 2013, the Vermont Legislature passed Act 39, the End-of-Life Choice Law, which allowed Vermont physicians to prescribe medication to a Vermont resident with a terminal condition with the intent that the medication be self-administered for the purpose of hastening the patient's death. Act 39 set forth conditions for the patient and doctors to be in compliance with the law, including that the patient be capable of making his or her own informed decision. But because he doesn't have a terminal illness, Act 39 doesn't pertain to Price.

"I don't fit the criteria as much as my doctors might like, and they tried their best to convince me otherwise, but all of my medical providers have been supportive of my decision," said Price, who doesn't consider what he is doing as suicide. "It's not extending my death."

Betsy Walkerman, president of Patient Choices Vermont, which successfully advocated for the passage of Act. 39, said it would be a mistake to conflate Price's decision with suicide.

"An end-of-life decision is really different from a situation where someone is distressed or has serious depression," she said. "There are people in the last stages of life who don't qualify for Act 39 who have stopped eating and drinking. It's a person's own choice how to live their life and how to spend their last days and weeks. This is a decision that any person can make and doesn't require Act 39 and permission from anyone."

Walkerman said Price's decision is a demonstration of how people take control of how they die.

"There are so many ways to prolong life as the medical community defines it," she said. "But whether a person wants that kind of life ... it doesn't sit there in a vacuum. It's part of the continuum of the evolution of medical care and people's interest in personal choice."

Rev. Audrey Walker, of the First Congregational Church in West Brattleboro, said she counseled Price on his decision, and while she advised against it, she understood why he decided the way he did.

"He has reached what I consider to be a very rational decision based on his spiritual beliefs and I support his decision," she said.

Rev. Shawn Bracebridge, the pastor at Dummerston Congregational Church, met with Price but only as a friend, he said, and he supports Price's decision as well.

"His decision is his and his alone and it's grounded in his spirituality," said Bracebridge.

Medical ethicist weighs in

Arthur L. Caplan, head of medical ethics at the NYU School of Medicine, noted that doctors are required to have a patient assessed if they believe he or she is depressed or otherwise rendered incompetent by a mental health illness.

"If that's not a concern," said Caplan, "if Mr. Price is rational, he retains the right to refuse medical treatment. He doesn't have to accept intervention. In fact, he has a fundamental right to deny an act of intervention."

Caplan noted that people make this type of decision every day, and by example referred to a Jehovah's Witness who might refuse a blood transfusion, even knowing it's a simple life-saving procedure.

"Mr. Price's doctors might have a good sense that their patient is well aware of what he is doing, that he is coherent and that he is able to comprehend his choices," said Caplan. "It is the doctor's duty to try to talk him out of, offer pain control or tailor your care, but that doesn't mean the patient will be persuaded."

Caplan also noted that some people with chronic illness who take their own lives are not as deliberate as Price appears to be, who has planned his death in advance after consulting with doctors, his therapist and members of the clergy.

Even when someone has a diagnosed mental illness that is affecting his or her decisions, said Caplan, it can be very difficult to stage an intervention.

"It's very difficult to force feed someone," he said. "They could pull the tube out. You would probably have to tie him down. It's very hard to do with an unwilling person."

A doctor might refer a patient for a psychological assessment, which could result in a court hearing to decide a person's fate, but Caplan said courts are often reluctant to get involved in end-of-life decisions.

"Our society leans very hard on honoring individual autonomy," he said.

Just the same, doctors who are trained to preserve life at all costs do not take it lightly to step aside and let a non-terminal patient die, said Caplan.

"It's a challenge for them, because they are thinking they can manage epilepsy and they can manage blood clots," he said. "But they are also trained to respect a patient's choices."

"The real issue," said Caplan, "is not so much is he competent, but does he need spiritual support? Is his quality of life bad because he is depressed or doesn't have companionship? Does he have friends and a social life?"

If anything that can still be expected from Price's doctors, said Caplan, is that they stay in contact with their patient and keep checking with him in case he changes his mind and needs medical care.

"I couldn't have been evaluated more in the past two years," said Price. "If I was suicidal I wouldn't be doing this right now."

Price said his own decision has been informed by his years of practice — especially in the days when there was no treatment for HIV/AIDS — helping people confront their own mortality and helping them "untangle suicide from their sincere desire to end their lives. Most were facing horrible continued pain and suffering."

'We don't know how to live in this world'

Price, originally of Dallas, moved to New England 16 years ago with his then-husband, Michael Lefebvre, to be closer to Lefebvre's parents, who were ill. They lived in Gardner, Mass., until their divorce in 2008, when Price moved to what he calls his "mountain home" in Westminster West.

"I had all these wonderful plans for retirement," he said. Instead, said Price, since his surgery he has been diving into his spirituality, studying up on Buddhism and Christianity.

"It's helped me to realize this is all an illusion," he said. "All of these material things we grab on to, that we think bring happiness, they don't bring happiness; they bring us pleasure, momentary pleasure. But they also bring us pain and cost a lot of money. We don't know how to live in this world. We copy others. I went through all that. I know the lifestyle and it did not lead to happiness."

Though he has always been a spiritual man, he was not a regular attendee of church. His parents, who still live in Dallas, are Southern Baptists, a denomination with which Price has issues.

"There is a lot of negativity," he said. "I don't believe in hate. They don't call it hate. They think they sit in judgment of the world."

His parents also did not accept the fact that he is gay. "My family was disappointed in my whole life, not becoming a Baptist and becoming a psychiatrist. To them, mental illness is a sin that can be prayed away."

The United Church of Christ accepts him as he is, said Price.

"They also accepted me as someone who sees ghosts," he said. "I didn't expect to be accepted, but they were like, 'Yeah, Jesus saw and spoke to spirits.'"

Price firmly believes that all humans have psychic abilities, but not everyone chooses to accept that or practice those abilities and he also believes humans need to be physically close to the earth, touching it with bare flesh as often as possible.

"There is so much energy from nature that we are blocking with our concrete and steel," he said, which is another reason he wants to die in his mountaintop home and not in a hospital or a nursing home. "I want to be here where I am absorbing the energy."

'A very spiritual man'

Price granted his therapist, Supriya Shanti, permission to speak with the Reformer. Shanti has been his therapist since the time Price was diagnosed with cancer.

She said his decision to end his life is not out of character, nor does she believe is it influenced by any mental health issues.

"He is a very spiritual man," said Shanti. "His decision is a result of his connection to his spirituality, the spirit world and god and his trust and faith in that."

Shanti noted that Price is a well-respected therapist in his own right and his decision has been informed by his years of offering counseling to his own patients.

"It's his personal choice," she said. "Given how he's been fighting for two years and continues to suffer due to his medical issues, I think it's his right to choose for himself and I support his choice."

However, on both a professional and personal level, Shanti said she wrestled with Price's decision.

"I definitely feel sad on a personal level," she said. "Professionally, it creates some conflict, because I don't know if we kept working together, maybe he would make a different decision. But the bottom line is, whoever shows up in my office, it's my job to support and guide them. I help empower people to make their own decisions."

Shanti also encouraged people to call and visit Price before he dies, rather than wish they had done so after he is dead.

"David wants company and wants honest conversation," she said. "Now is the time to visit. It's really important, especially in the last days of life on this physical plane, to be surrounded by people who love you."

A necessary discussion

Walkerman said Act 39 and people like Price have ignited a discussion that has been a long time coming.

"He had a discussion with his family, his doctors, clergy," she said. "A lot of people have trouble even starting these conversations. Any story helps illustrate for people how to have those discussions, rather than suffering alone, thinking they have no choice."

"It's important for people who are facing health and emotional crises to take a lesson from this in that you can reach out and get support for your spiritual and emotional needs," said Susie Webster Toleno, the pastor at the Congregational Church of Westminster West. She said that while she didn't counsel Price on his decision, they discussed the spiritual aspects of his illness and end of life. "There are people who will answer your phone call, who will listen and provide support," she said.

Toleno said those people include local clergy members and organizations such as the Brattleboro Area Hospice, at 802-257-0775 (Brattleboro area) 802-460-1142 (Greater Falls area) or brattleborohospice.org.

"Brattleboro Area Hospice has a lot of support for people who are in tough health situations, even if they don't qualify for hospice," she said.

Price said if, when he first received his cancer diagnosis, he had the knowledge he has today, he might have chosen not to have surgery to remove the cancer from his body.

"It would have been quick and easy and now here I am, extending my death. But I suspected I wasn't going to survive. Maybe my family needed time to accept that and maybe I had amends to make. I did a lot of forgiveness work, which is the most important thing."

If there is one last notion he would like folks to consider challenging it's the belief that all the world is knowable.

"What we think we know it probably not even one-thousandth of what it out there," said Price, especially when it comes to spirituality. "Philosophers have been arguing about does God exist for forever. To think that you are smarter than Plato, to me that is intellectual arrogance. Even Einstein said 'The more I study science, the more I believe in God.'"

He also asked folks who would like to remember him make a donation to the First Congregational Church for its renovation. To do so, send a check to First Congregational Church, 880 Western Ave., West Brattleboro, 05303, with "In memory of David Price, for the renovation fund," in the memo line.

To visit Price, call him in advance at 802-869-3056.

Bob Audette can be contacted at 802-254-2311, ext. 151, or raudette@reformer.com.


TALK TO US

If you'd like to leave a comment (or a tip or a question) about this story with the editors, please email us. We also welcome letters to the editor for publication; you can do that by filling out our letters form and submitting it to the newsroom.



Powered by Creative Circle Media Solutions