End-of-Life Choice, Palliative Care and Counseling

Posts TaggedAudrey Roll-Shapiro

Dying patients should have the right to make informed choices

Guest blog by Audrey Roll-Shapiro of Bellingham, Washington. Audrey and her family were not informed about Washington’s Death With Dignity Act until her husband Norman endured an agonizing death.  Their story first appeared in the Bellingham Herald.

My husband, Norman Shapiro, died from esophageal cancer at our home on April 21, 2010. He was 88 years old and was a revered father, stepfather, uncle, and member of the Bellingham community.

Norman was diagnosed with cancer in September of 2009. Although he tried chemotherapy and radiation, there was no question that his cancer would prevail. As his health deteriorated, we accepted that death was near, and Norman became a patient of Whatcom Hospice, which is owned by PeaceHealth, the Catholic health care system that also owns St. Joseph Hospital. He wanted to be kept as comfortable as possible, to have his pain managed, and to die with dignity.

Although Whatcom Hospice’s caring, attentive staff did what they could, Norman still had a bad death. It was clear to me, my daughter, and his niece, that he was suffering tremendously, and we were all traumatized by watching helplessly as he died a slow and agonizing death. Not once did any Whatcom Hospice staff mention that Norman had other options, such as palliative sedation (sedation to unconsciousness until death) or aid in dying under the Washington Death With Dignity Act (DWDA). I learned about the DWDA the day after Norman died.

Feeling betrayed, angry, and even more grieved, I wrote a letter to the director of Whatcom Hospice, and then met with him to find out why Norman and I were denied information about the DWDA. During our meeting, he said that the DWDA was “contrary to our values.” He also confirmed that it is Whatcom Hospice’s policy to not discuss the option of the DWDA, to not refer patients to other organizations that will, and to “not acknowledge the existence of Compassion & Choices of Washington” (877.222.2816, www.CompassionWA.org), the only organization in Washington that supports patients who want the option to use the law.

While Whatcom Hospice has the legal right to refuse to participate in a patient’s use of the DWDA, the law does not authorize withholding information necessary for patients to provide informed consent, one of the most important principles of medical practice. If a medical provider is opposed to the option, they have an ethical duty to refer patients to another source of information. In effect, Whatcom Hospice made Norman’s choice for him by failing to inform him of all of his end-of-life options.

Norman served in the U.S. Army Air Corps during World War II at Okinawa, Japan. When Whatcom Hospice imposed its religious and moral values on my husband, it trampled on the freedoms he fought to uphold.

Norman had a long-held belief in choice at the end of life; if he had been aware of the DWDA, I know he would have chosen it. My daughter and I believe it was wrong for PeaceHealth and Whatcom Hospice to put its faith-based, internal policies ahead of Norman’s right to make fully informed decisions about his end-of-life choices.

Audrey Roll is an expressionist artist who interprets the West with colorful painting and sculpture, often combining the two. Her pieces are in major collections including the Kennedy Center and the Kiplinger Collection in Washington D.C., and the Whitney West in Wyoming.

Bellingham widow persuades hospice to inform patients of Death wih Dignity law

Kie Relyea
Bellingham Herald
Via AARP.org

BELLINGHAM — The day following her husband’s painful death from esophageal cancer on April 21, Audrey Roll-Shapiro learned of the new state law that would have allowed him to obtain a lethal dose of medication to hasten his dying.

Outraged, the Bellingham resident sent a letter to Whatcom Hospice — the agency had come to their home in March to care for Norman Shapiro in his final days — asking why information about the law, called Death With Dignity, was not mentioned to them.

“The efforts of the very attentive, loving hospice staff did not alter his extreme discomfort and pain as he died. It simply went on too long,” she wrote in her April 29 letter to Richard Hammond, manager of Whatcom Hospice. “Why were we never made aware that we/he had a choice of a more mercifully quickened ending? … He was unquestionably in pain, severe discomfort, ready to leave, fighting to leave.”

Roll-Shapiro also met with Hammond after sending the letter.

Voters approved the measure creating the Death With Dignity law on Nov. 4, 2008, after a bruising campaign. The law went into effect March 5, 2009. Opponents consider it physician-assisted suicide.

Whatcom Hospice is a program of PeaceHealth St. Joseph Medical Center, a Catholic health-care provider.

From the beginning, PeaceHealth, which is also the parent of St. Joseph hospital and PeaceHealth Medical Group, has said it would not participate, choosing to exercise the opt-out provision allowed by the law.

That worried some people who wondered about the impact of such a large medical provider in the community deciding it would not let its employees help the terminally ill end their lives.

Since Norman Shapiro’s death at age 88, his widow has pushed for, at the very least, hospice to share information about the law with its patients.

“It doesn’t do to have rights if you don’t know you have them,” said Roll-Shapiro, 77.

Norman Shapiro was diagnosed with cancer in September 2009. Chemotherapy and radiation didn’t help.

Eventually, he had trouble breathing, his legs swelled, he could not control his bladder and he could not eat.

Roll-Shapiro said her husband was in agony.

Her daughter Susanne Preissler, who watched her stepfather die, also criticized Whatcom Hospice.

“The law doesn’t force them to provide it, but the fact that they don’t even tell you about it, that’s what I think is criminal,” she said in a phone call from Los Angeles. “They can’t make the choice for people. They don’t have that right.”

Whatcom Hospice has always provided a written statement to patients and their families that notes it “does not offer treatment intended to prolong or shorten the dying process,” Hammond said in an e-mail interview.

But on Aug. 19, officials announced a change to that written statement. The material given to those admitted to hospice now includes a paragraph that references the law and points to resources for patients who want to use the measure, including patients’ doctors.

“After meeting with Mrs. Shapiro and hearing her concerns, we agreed to develop a more specific statement to inform patients considering hospice admission,” Hammond said.

“That would have been terrific to even have that little bit,” Roll-Shapiro said after learning of the addition. “At least there’s something. You take these baby steps.”

STATEMENT REFLECTS PEACEHEALTH BELIEF

The new paragraph also makes it clear that PeaceHealth and Whatcom Hospice will not participate in Death With Dignity.

“Our belief is that life is sacred and that intentionally ending one’s life is not something that we would support. It’s being consistent with Catholic teaching,” said Ross Fewing, director of ethics at PeaceHealth St. Joseph Medical Center.

The recently approved statement for hospice patients does not include Compassion and Choices of Washington as a resource. The organization pushed for the law’s passage in the state, guides people who want to use the measure, and has compiled a referral list of doctors and pharmacies willing to help the terminally ill hasten their death under the law’s provisions.

“Under Catholic moral theology, it would be direct participation in the act,” Fewing said when asked why Compassion and Choices was not listed as a resource.

Robb Miller, executive director of Compassion and Choices of Washington, said Whatcom Hospice’s statement was “a small step in the right direction but doesn’t go far enough and isn’t particularly helpful.”

“A referral to any organization other than Compassion and Choices isn’t particularly helpful, burdens patients and their loved ones, and delays or even ultimately prevents patients from using the law,” he added. “People should know all of their end-of-life options.”

For her part, Roll-Shapiro called Whatcom Hospice providers tireless and selfless. Her criticism isn’t with the care they provided her husband, with whom she spent 27 years, but with their decision to opt out.

“We know they’re good people,” she said. “We know they’re dedicated to their point of view, which should never be put before the law of the land. Why pass the law if people can’t get to it easily?”

CARE BUT NOT PARTICIPATION

PeaceHealth’s decision to opt out means its doctors cannot prescribe lethal medication while on the clock, its pharmacies will not fill lethal prescriptions, and patients will not be able to take the lethal doses on its premises, including the new 12-bed Whatcom Hospice House expected to open in September.

Whatcom Hospice providers will care for clients before they take the medication and after, but they will not be on the premises while the patient takes the dose.

Several patients have used the law while under the care of Whatcom Hospice, said Hammond and Dr. Meg Jacobson, Whatcom Hospice medical director.

And PeaceHealth has not barred its doctors, nurses, social workers or other employees from talking about the law, Fewing said

“Having the discussion is not a problem,” he said, but the line is drawn at referring a patient to a doctor who participates in the Death With Dignity law.

If patients want to use the law, the recently approved statement for hospice sends them to resources that include Whatcom County Medical Society, which keeps a list of local doctors who are opting out themselves.

Other organizations mentioned in the statement are the Washington state Department of Health and the Washington State Hospital Association.

ADAPTING TO NEW LAW

The Shapiros were living in the state when voters approved the measure. While Roll-Shapiro said she remembered reading about the voter initiative, she didn’t realize it passed.

Miller, of Compassion and Choices, said the Shapiros’ case exemplifies a problem of certain health and hospice providers “imposing their religious values on their patients.”

“It’s very important for people to understand their health-care provider’s policy as it affects withholding information from people,” Miller said.

He also accused PeaceHealth of “gagging employees from talking about the option of Death With Dignity,” saying he’s heard from employees that it does so.

“It’s a challenge,” Fewing said. “We’ve got a brand new law. I’m sure there’s going to be some bumps in the road. I think there are some people who are going to be hurt by that. I don’t think it’s intentional. It’s how do we integrate a new law?”

Such transitions aren’t exclusive to Washington state.

George Eighmey, executive director for Compassion and Choices of Oregon, calls the evolution of the law’s application there “a tremendous improvement.”

The measure took effect in Oregon in 1998.

“The majority of hospices, including the non-religious ones, were opposed or reluctant to participate in any way in the first couple of years,” Eighmey said. “Those first couple of years I thought we were going to have a very difficult time to overcome that. I was pleasantly surprised. By the third year, we started seeing the change.”

These days, just one or two hospices still decline to refer people to Compassion and Choices of Oregon, he said, and neither are owned by a religious organization.

“I know in time Washington will be very similar to Oregon,” Eighmey said.

ABOUT DEATH WITH DIGNITY

Washington was only the second state in the nation to pass such a Death With Dignity law, which is similar to the Oregon measure that went into effect in 1998 after protracted legal battles. The law allows terminally ill adults who have been told by their doctors that they have six months or less to live to ask for a prescription for lethal medication.

Patients making the request must be competent, must ask twice verbally and again in writing, and must be able to take the medication themselves. They can rescind their request at any time, and they must live in Washington