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Accessing Death With Dignity

  • John Reese, of Strafford, Vt., is surrounded by paintings by his wife Deborah at his home on March 5, 2018. Deborah Reese, died of pancreatic cancer in 2016. She sought to have medical aid in dying, but died at DHMC before she could receive it. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Deborah Reese from her memorial service program. (Valley News - Jennifer Hauck) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Dr. Daniel Stadler, left, takes a question from Paul Cotter, of Lebanon, during a talk about death with dignity at Dartmouth-Hitchcock's Aging Resource Center in Lebanon, N.H., Tuesday, Feb. 28, 2018. Stadler presented several case studies of patients who sought plan for death while facing terminal illness, and discussed his approach to each. Vermont law provides a way for patients to end their own lives with prescribed drugs, but it is illegal in New Hampshire, though patients can take more passive measures to hasten the end of life. (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Fred Crowley, of Vershire, a member of the Patient Choices Vermont board, shares information about the number of patients who have been prescribed medications to end their lives during a talk on death with dignity by Dr. Daniel Stadler at Dartmouth-Hitchcock's Aging Resource Center in Lebanon, N.H., Tuesday, Feb. 28, 2018. The Vermont Department of Health reports that, of 52 patients prescribed life-ending sedatives through the state's patient choice law in the period between its inception in May 2013 to June 2017, 48 had died and 29 of those individuals used the drugs. (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.

  • Steve Swett, of Hanover, takes notes as Dr. Daniel Stadler speaks on death with dignity at Dartmouth-Hitchcock's Aging Resource Center in Lebanon, N.H., Tuesday, Feb. 28, 2018. (Valley News - James M. Patterson) Copyright Valley News. May not be reprinted or used online without permission. Send requests to permission@vnews.com.



Valley News Staff Writer
Saturday, March 10, 2018

South Strafford — Upon receiving a diagnosis of pancreatic cancer in the spring of 2015, South Strafford artist Deborah Reese sought treatment for the disease, which had taken her father’s life years before.

Even as she sought to extend her life, Reese, who was in her mid-70s, also sought a prescription for medications that would allow her to end her life if she decided that was her best option.

Having witnessed her father’s painful death, “It affected her so much she was afraid it would affect her children,” her husband, John, recalled in a recent phone interview.

Though “death with dignity,” also known as physician-assisted suicide and medical aid in dying, has been legal in Vermont since 2013, Reese discovered that it was anything but simple — “heartbreakingly” difficult is how she described it to friends — to arrange to have the medications on hand.

And she is not alone. A number of factors — conflicting state laws, federal prohibitions, doctors’ attitudes, expense — serve as barriers to death with dignity even though it is legal in Vermont.

It also is a topic that remains intensely sensitive in the medical community.

“You couldn’t approach anybody that you didn’t know,” John Reese said. “It’s worse than abortion.”

Deborah Reese entered Dartmouth-Hitchcock Medical Center two days before she had planned to pick up the prescription for the sedative and antinausea medication. The cancer had spread to her digestive tract. She spent her final days at DHMC visiting with her children and one of her beloved dogs (which a friend snuck into the hospital), before she died in her sleep on Oct. 12, 2016, 18 months after her initial diagnosis.

“Her passing was about as good as it could be under the circumstances,” John Reese said, noting that at the end her pain was very well controlled. “I have a feeling that they basically gave her more than she needed in terms of pain control.”

But, he said, “The issue, again, is we’ve got the law, how do we find people who will do this?”

Conflicting State Laws

Some of the obstacles to obtaining a prescription are written into the law in an effort to protect people. Vermont’s death with dignity law, Act 39, requires that a terminally ill Vermonter with less than six months to live request a prescription from a physician twice verbally (two weeks apart) and once in writing. The written request has to be signed by the patient with at least two witnesses who are not interested parties. The first physician’s diagnosis and prognosis then has to be confirmed by a second physician. Patients also have to be mentally competent and able to administer the drug themselves.

Other obstacles stem from the fact that medical aid in dying is not sanctioned by the federal government and is legal only in the District of Columbia and five other states, none of them a Vermont neighbor. Some physicians are hindered by the funding or policies of the institutions where they work. If a patient’s primary care provider is not willing or unable to prescribe the medication, it can be difficult to find someone who is.

It’s difficult to know how many people seek prescriptions, but are unable to get them. The Vermont Department of Health does collect some information about the law, including the number of people who obtained prescriptions, the number who took the drugs and what disease they were suffering from. Fifty-two people fulfilled the requirements to obtain such a prescription and 29 of them died using it between May 31, 2013 and June 30, 2017, according to a report presented to the Vermont Legislature in January.

But, the data the health department collects do not include information about any access problems people may be having.

“We don’t have metrics on that,” Vermont Department of Health Senior Policy and Legal Advisor David Englander said. “I’ve heard in some (parts) of the state there are access issues.”

If someone were to come to the health department seeking assistance in finding a provider, Englander said he would direct the patient to their primary care physician.

Under the law, Vermont physicians are not required to prescribe the medication, but they are required to provide terminally ill patients information about it.

A significant barrier for Upper Valley patients living in Vermont is the fact the the region’s dominant health care institution, DHMC, is located in New Hampshire. Physicians who practice in New Hampshire cannot prescribe medications that would hasten death even if they hold Vermont medical licenses and are treating Vermonters.

“Vermont law is not applicable in New Hampshire, and New Hampshire has no law granting immunity to physicians who prescribe medications for such purposes; as a matter of fact, purposefully causing or aiding suicide is prohibited under (New Hampshire law),” D-H spokesman Rick Adams wrote in an email.

In theory, a physician with privileges at DHMC who also works in Vermont could write a prescription for a Vermonter, given that all requirements under the law are met.

“If they’re licensed in Vermont and seeing patients in Vermont and the patient is a resident of Vermont, my understanding is that there is nothing that could legally restrict the provider,” said Dr. Daniel Stadler, DHMC geriatric team leader who said he does not provide such prescriptions to patients, but he does provide information when patients ask about the option.

It seems unlikely that New Hampshire will pass a medical aid in dying law anytime soon. A bill proposed this session by state Sen. Martha Hennessey, D-Hanover, would have created a study committee to look at end-of-life options, including medical aid in dying, but died in committee late last month.

Doctors’ Obligations

But the difference in state laws isn’t an excuse for DHMC doctors not being able to help Vermonters access care they have a legal right to, said retired radiologist Fred Crowley, who sits on the board of directors of Patient Choices Vermont — a Shelburne-Vt.-based nonprofit that advocated for Act 39 and now aims to educate the public about the law.

It’s been more than four years since Vermont’s law went into effect, said Crowley, a Vershire resident who spent most of his career at Springfield (Vt.) Hospital.

“That’s a long enough time ... for DHMC to try to address the needs of the patients,” he said. “It’s not acceptable to say, ‘Oh, we can’t help you; we don’t know anything about this.’ ”

Crowley said he does not mean to suggest providers in New Hampshire ought to participate in prescribing medications under Vermont’s law, but he does believe they ought to be informed about it and be able to refer patients to other providers who can help them.

Doctors “have an obligation to their patients,” he said.

Stadler, who also serves as medical director for two area nursing homes — Hanover Terrace and Genesis Healthcare’s Lebanon Center — said he directs patients to the national organization Compassion & Choices for more information about Vermont’s law.

“We’re not gagged in any way, shape or form,” he said.

But before he gives patients the web address, Stadler said he informs them about whether the law can be applied to someone with their condition. In particular, Stadler said he works to determine whether a patient seeking to end her life is in psychological distress, suffering from another symptom that may be treatable, or if wishing to die in this way is simply consistent with her values. He also said that suicide can have a legacy effect, so the effect of a patient’s decision on other family members also needs to be considered.

“I don’t have an absolutely fixed opinion on this,” he said. “I think it’s a very aggressive step … where there are often other options.”

These other options include medication (such as morphine) to relieve suffering that — in some cases — may also have the effect of accelerating the dying process, voluntarily stopping eating and drinking, and palliative sedation, which involves medicating a person to the point of unconsciousness and is used only when a physician has “tried everything from the kitchen sink and you just can’t make (a patient’s pain and discomfort) go away,” Stadler said.

Stopping eating and drinking “is a very real option” as an alternative to physician-assisted suicide, Stadler said. If a patient isn’t willing to stop eating and drinking, it makes Stadler question the person’s desire to end his or her life and “causes me some reluctance to say then, ‘I should prescribe this to you,’ ” he said.

Stadler also said he feels that the debate about medical aid in dying, which is an option appropriate in a tiny number of cases, is a distraction from larger issues about the end of life.

“It’s a controversial subject that a lot of people want to talk about, but it actually affects very, very few people,” he said.

Stadler cited an analogy he attributed to DHMC’s former director of palliative medicine Ira Byock, an opponent of Act 39. Byock likened the debate about whether physicians should be able to prescribe life-ending medications to a fistfight in front of a burning building.

Other end-of-life issues that merit attention include better controlling symptoms, matching individuals’ wishes with the degree of medical intervention provided and improving supports for families and caregivers “who are bearing a tremendous burden here,” Stadler said.

Federal Barriers

Like DHMC physicians, those who practice at the White River Junction VA Medical Center are not allowed to prescribe medications to hasten someone’s death. The VA doctors refer patients who ask about the law to the Vermont Ethics Network’s website, vtethicsnetwork.org/decisions.html, according to White River Junction VA spokeswoman Katherine Tang. The site provides information on advance directives, health care planning, decision-making and other topics related to end-of-life care.

“While assisted suicide is prohibited within VA regardless of state law, it is our policy to ensure veterans understand all their options,” Tang wrote in an email.

Another obstacle, or at least a perceived obstacle, is that physicians who work at federally qualified health centers — which in the Upper Valley includes Randolph-based Gifford Health Care, Springfield (Vt.) Medical Care Systems and Bradford, Vt.-based Little Rivers Health Care — are also not allowed to write these prescriptions in their capacity as providers at an FQHC.

“Prescribing medications to hasten death is against federal law and since we are recipients of federal grant funds, we must comply with federal laws as a condition of that funding,” Little Rivers CEO Gail Auclair wrote in an email. “We do not currently have a policy regarding this but it is in our plans to create one soon.”

But Dr. Lou DiNicola, the medical director of primary care at Gifford, said it’s not quite so simple. According to DiNicola’s reading of the law, physicians at a federally qualified health center can prescribe these medications, but they cannot do so at any of the health center’s facilities, nor can they be paid for doing so.

According to the 1997 federal Assisted Suicide Funding Restriction Act, no federal funds can be used “to provide any health care item or service furnished for the purpose of causing, or for the purpose of assisting in causing, the death of any individual, such as by assisted suicide, euthanasia, or mercy killing.”

“If you read this, it really comes down to funding,” DiNicola said.

DiNicola said Gifford doctors often provide medical care outside of their “salaried scope of practice” such as helping out at free clinics or assisting in medical supervision of athletic events. Physicians also commonly call in prescriptions and do not receive payment for doing so, he said.

“Basically our reading and my reading still is: If indeed a physician chooses to participate in assisted suicide outside our facility; outside of being paid for it … they are not violating the federal law,” he said.

DiNicola, a pediatrician, has never prescribed medication to hasten someone’s death. He has, however, heard rumors that other Gifford physicians have and he personally supports it.

“Why do we say we’re going to do the best that we can to get them to an end point (and then say we) can’t do this one thing?” he said.

There is recent evidence that attitudes among the state’s doctors may be changing. In November, the Vermont Medical Society voted to revise its policy on end-of-life care, supporting physicians’ right to choose whether to participate “in the context of the physician-patient relationship.” The society had previously opposed the law.

Dr. John Leppman, a mostly retired internist at Springfield (Vt.) Hospital, said he supported this change.

Physicians “should act according to their best moral guidance as we should with any other ethical views that come up,” he said.

Dr. Bob Backus, a retired family medicine doctor who worked at Grace Cottage Hospital in Townshend, Vt. for about 40 years, said patients seeking information about this end-of-life option ought to begin with the health care provider who knows them best.

Though Backus, who retains his Vermont medical license, still volunteers at a drop-in clinic and conducts home visits, declined to say whether he has prescribed medication to end a patient’s life, he said: “My belief is you do everything you can to provide legal, competent medical care ... When what we’re doing doesn’t work … We’re talking about making life comfortable for someone when they’re dying.”

Doctors also have to be frank with patients seeking a life-ending prescription when they believe there are other options the patients have yet to consider, he said.

“(You’ve) just got to be reasonable and think it through,” he said. “Each one has their own medical (and) ethical view of the world. They don’t all come out cookie cutter.”

And, he said, the second opinion of another physician helps safeguard the process.

He also emphasized the importance of privacy. Because using medication to hasten death is controversial, he said physicians, patients and their families have to be wary of protesters showing up at their homes. Disclosing that this is how someone has died might mean that neighbors stop talking to grieving neighbors just when they could use support, he said. Public knowledge that a patient has received a prescription could also mean life insurance companies drop coverage, he said.

“To me this is a very personal thing,” he said. “... It’s about listening — listening and loving.”

‘A Lot of Roadblocks’

Other barriers to access include the two-week required wait for people who are nearing the end of their lives, the cost of the drugs — which include those to fight nausea and those to sedate the person — and the small number of pharmacies that fill them, said John Young, a Bethel resident and Gifford palliative care and end-of-life nurse.

He said the cost can often be between $1,500 and $3,500, and insurance won’t cover it. He’s aware of just three pharmacies that will fill the prescriptions.

“I think right now it’s valuable to people that want it and people that can afford it,” he said.

Young has witnessed the death of one person through Act 39.

“That went really smoothly,” he said. “Luckily she was a person who was an advocate; a really strong person willing to really fight for what she needed.”

Monique van de Ven, of South Royalton, died last year at 56 after living for several years with sinus cancer, which had required the removal of her right sinus and eye.

Once the cancer spread to van de Ven’s brain and was terminal, she qualified for Vermont’s Act 39, and wished to take advantage of the law in order to avoid pain and pain medicine, said her friend Suzanne Lacey, of Vershire, who served as executor of van de Ven’s estate.

Van de Ven “did not want to be on the pain meds because they made her so groggy,” Lacey said.

But it took van de Ven a year to obtain the medication, which cost about $3,000, Lacey said.

“It wasn’t easy and it was expensive,” Lacey said.

The doctors who van de Ven initially approached told her that they had been trained to “save lives, not end them,” Lacey said.

Thetford resident Tom Ozahowski, 67, has metastatic prostate cancer. For now, the marathoner said the medication he’s on is working to slow the progression of the disease.

“I’m feeling pretty good,” he said in a recent phone call from Florida, where he was vacationing with one of his adult sons.

Even so, Ozahowski said his two sons watched his wife die of melanoma in 2015, and he’d rather save them from watching him face a similar fate.

“I don’t want them to know that I’m suffering,” he said. “I thought it would be best if I had medical aid in dying.”

Though he does not currently qualify because he has more than six months to live, Ozahowski, a mostly retired DHMC nurse, sought information from his DHMC-based providers. But he found that they didn’t have much knowledge of Vermont’s law.

In addition, he said he ran into differing viewpoints. Though Ozahowski said he doesn’t fear death and looks forward to reuniting with his wife someday — “Why should I suffer? There seems to a better place to go to” — he said some doctors are focused on giving people as much time as possible.

“There’s a lot of roadblocks,” Ozahowski said.

In the case of Deborah Reese, she eventually located two physicians at a hospital in southern Vermont who were willing to speak with her and prescribe, John Reese said. She did so with the assistance of her friend Beverly Bilsky, who contacted the national group Compassion & Choices.

Bilsky said Compassion & Choices wouldn’t give her the names of the doctors, but gave them to Reese when she contacted them directly.

“I’m a good researcher,” Bilsky said. “I just keep following something. Debbie, this is what she really wanted.”

After tracking down two doctors willing to prescribe, the Reeses made a couple of trips to the hospital, spending time talking with each doctor, John Reese said.

They “want to make sure that the person knows what they’re doing,” John Reese said. “That they have their wits about them.”

Gaining access and feeling more in control of her situation helped Reese toward the end of her life, Bilsky said.

“Just by finding it … made her calmer,” Bilsky said. “The idea that they have the ability to control their lives if they choose is a good thing.”

  John Reese, for his part, was relieved he didn’t have to watch his wife of 52 years take a drug to end her life.

“She wanted this and I wasn’t about to say no,” he said.

Staff writer Nora Doyle-Burr can be reached at ndoyleburr@vnews.com or 603-727-3213.