End-of-Life Choice, Palliative Care and Counseling

Posts TaggedMontana

Signs of Hope in Western States

Historically, end-of-life choice has suffered at the hands of politicians. The people’s simple yearning for freedom and control at the end of life has been no match for the heavy-handed political power of long-established religious and medical lobbying institutions. In statehouse after statehouse aid in dying fell to Catholic bishops’ threats of shunning and excommunication, and the American Medical Association’s power to grant and withhold political favors.

Even the Oregon legislature defied the popular will in 1997 and put a repeal of the voter-approved Death with Dignity Act on the ballot. Voters reaffirmed the law 60/40% that November and Oregon’s politicians have refrained from tampering with it ever since.

Now lawmakers in other states seem to be getting the same message: The people want and deserve something to say about how they might meet an imminent, inevitable death from terminal illness. This legislative season has seen the tide shift.

In Washington State SB 5378, attacking the state’s Death with Dignity Act (DWDA), failed to pass out of committee. Politicians seem to lack interest in challenging the will of nearly 60% of the voters, so the bill was never scheduled for a hearing and never made it out of the gate to begin the long legislative process.

SB 5378 would have repealed a crucial portion of the DWDA by labeling deaths under it as “suicide.” In fact, the bill was a thinly veiled attempt to identify people who used the DWDA and expose participating physicians. It would have made it possible for anti-choice extremists to intimidate physicians and harass grieving families and would have set the stage for hostile demonstrations at burials and memorial services, and placards and pickets at physician offices. Good riddance to that bad bill.

Montana senators also decided not to mess with that state’s court-sanctioned aid in dying. The senate judiciary committee considered three bills. One would have overturned the Montana Supreme Court decision. One would have undermined its ruling and a third would have strengthened the ruling and gone further to protect physicians. Senators of both parties heard from thousands of constituents that government should stay out of the patient-physician relationship and private end-of-life decisions.

So they did. When asked to over-ride the committee, the full senate voted overwhelmingly to stay out as well. Now it’s up to the medical community to conform to the court’s guidelines and mature the standard of care for aid in dying in Montana. This is as it should be, and as it is for every other end-of-life decision. One Montana senator noted that disconnecting a ventilator is just as crucial in deciding the time and manner of death, and government stays out of that decision — with no adverse consequences.

For the second year Wyoming lawmakers buried HB 148, which would create the crime of providing medical care “intended to cause death.” Such a bill would establish a thought crime, since no one can know what is in mind of the doctor as she advances morphine in the face of extreme suffering, or disconnects a ventilator or other life sustaining therapy. Declining or withdrawing a feeding tube was a particular target of this bill. Good riddance to that very bad bill.

It’s too early to say elected officials are becoming more responsive to their constituents than to powerful lobbying power in these matters. Vermont lawmakers may soon hold hearings on an Oregon-style Death with Dignity bill. Its passage would certainly be a most positive development. May the politicians of Vermont find courage and leadership in the recent actions of their colleagues in Washington, Montana and Wyoming.

My Right to Choose

By Dustin Hankison. Dustin is a community activist who lives in Missoula, Montana.

Montana has become the latest battleground of a somewhat revolutionary cultural shift. Our state is deciding whether to extend to our citizens the right and personal choice to, under the circumstances of having a competent mind and a terminal illness, end their life in a planned process at a time of their choosing.

I am a Montanan living with a disability, and I support the right of terminally ill Montanans to make their own end-of-life decisions.

To be clear: under the law, a “terminal condition” is:

an incurable or irreversible condition that, without the administration of life-sustaining treatment, will, in the opinion of the attending physician or attending advanced practice registered nurse, result in death within a relatively short time.

These are my end-of-life choices under consideration. I believe that it should be up to me, not anyone else, to make the decision about how my life ends.

I know the gravity of the issue at heart here. Life and death aren’t trite, abstract political concepts. “Aid in dying” is NOT policy banter. This topic has particular relevance to me because I am living with the terminal illness of Duchenne Muscular Dystrophy (DMD). At some point in the future, DMD will cause my death via cardiac muscle weakness.

As an advocate for the rights and lives of people with disabilities, I look at aid in dying not simply through the lens of what this means to me. I’m compelled to take into account what instituting aid in dying means to the Montana disability community.

I’m also a son, nephew, brother, grandson, cousin and friend to the people of Montana. What would aid in dying mean to them? The question becomes more complex when considering all the people it would affect.

It comes down to personal beliefs, personal perspectives and personal values.

I believe that people who are competent and terminally ill have the absolute, sovereign choice to end their lives when they want by the self-administration of a life-ending medication prescribed by their doctor. I support the Baxter decision and efforts to make it viable. We can honor the choice of the patient and be protective of ALL vulnerable populations. This is not beyond our scope, as the data from Oregon and Washington indicate. Wisdom must be our guide and compassion must be our goal.

I love my life and I want to live it as fully and as long as I am able. But when I know the end of my life is near, I want to be the one who decides my fate.

Many studies have concluded that there has not been a single person living with a disability who has even used the law, much less been pressured to do so. I’d like you to take the time to watch this video of Oregonians with disabilities talking about their view of the Death with Dignity law:

Concern about my vulnerability should not be used to deprive others of their end-of-life rights.

Montana Committee’s Vote Preserves Right to Aid in Dying

The Montana Senate Judiciary Committee today maintained the Montana Supreme Court’s Baxter ruling. The committee voted 7 to 5 against Sen. Greg Hinkle’s bill (SB 116), that would have revoked the right of terminally ill patients to request aid in dying from their physicians. A bipartisan group of lawmakers – Sens. Augare (D), Blewett (D), Jent (D), Larsen (D), Moss (D), Peterson (R) and Vincent (R) – voted against the measure. The committee heeded testimony from doctors, patients, family members, hospice nurses and clergy, and its vote was consistent with the official positions of both the Montana Medical Association and the National Association of Social Workers Montana Chapter. The committee’s vote leaves responsibility to develop the standard of care for aid in dying with Montana’s medical community.

The Montana Supreme Court on December 31, 2009, in Baxter v. Montana, recognized that the statutes empowering patients to direct their end-of-life care, even when decisions may advance the time of death, reflect public policy in favor of patient autonomy. The court ruling recognizes that it is the public policy of Montana to protect the choice of competent dying patients to choose aid in dying, and makes clear that there is no basis to prosecute physicians who provide it. Today’s vote leaves that ruling intact.

Roberta King, of Missoula, whose father, Bob Baxter, was the lead plaintiff in the landmark case, said, “My father died without the peace and dignity he so dearly wanted for himself and others. I’m sure he would be deeply gratified that other terminally ill Montanans will have the choice and comfort that aid in dying affords them.”

Missoula attorney Mark Connell, who argued the case before the Montana Supreme Court, described the decision as “a victory for individual rights over government control. These are decisions that should be – and now can continue to be – made by the terminally ill patients whose lives, deaths and suffering are at stake, based on their own religious, spiritual and family beliefs.” Connell added: “I know Bob Baxter would be very pleased that the committee declined to over-ride the court’s ruling. Doctors who practice within the clear confines of the court’s decision are protected.”

“The people of Montana strongly support the Baxter decision,” said Sen. Anders Blewett. “I have heard from many elderly Montanans who live in my district on this issue. They are proud of their independence, and believe the power to make their own end-of-life decisions belongs to them, in consultation with their doctor, not to the State of Montana, nor to any organization or institution.”

“The committee’s votes leave the Montana Supreme Court’s decision in place,” said Dr. Stephen Speckart, an oncologist from Missoula. “It now falls to Montana physicians to develop the standard of care to respect and protect their patients’ end-of-life decisions. Montana’s medical community is certainly up to the task of including aid in dying in the options available for patients with end-stage cancer and other terminal diseases.”

The committee also voted last week to table Sen. Blewett’s bill (SB 167), deciding not to adopt specific practice guidance and immunities.

“It is unfortunate that the committee did not go further to codify the court’s decision, providing physicians with additional protections for honoring patients’ decisions,” said Dr. Speckart. “However, Montana’s medical community can rest assured the Senate Judiciary committee examined this issue closely, and concluded that it is proper public policy for physicians to respect a dying patient’s decisions.”

Steve Johnson, a Helena brain cancer patient, said, “I think I should have something to say about my ending. I want my physician to be able to respect and honor my choice to die with dignity. I don’t know whether I would ultimately take medication to end my life peacefully, but I’d like to have the choice.”

Dying With Dignity

By Roberta King of Missoula, Montana. Roberta is the daughter of Bob Baxter, who fought in the Montana courts to have the legal right to aid in dying. (This is the second article in a three part series. The first article can be read here.)

My dad called me the summer before he died and told me he had purchased a gun and was going to end his life. He had gone to court to seek a legal right to aid in dying but it was taking a long time and his aggressive cancer was progressing fast.

When he told me his plans, I scolded him for being selfish and informed him that my mother would have that violent death as her memory of his passing. We argued about the court case. I was hoping it would resolve before long and I of course, being the child, didn’t think he would leave so soon. He was only 76 years old. Dad never mentioned it again; he sucked it up and hung on as long as he could.

During the last few months of his life, my father’s disease progressed to the stage where he suffered a great deal and was in a constant state of misery. His symptoms included severely swollen glands; constant pain and aching that made it extremely difficult for him to sit up; problems breathing; chronic fatigue and weakness; persistent infections; inability to sleep; loss of appetite; weight loss; and horrible episodes of alternating sweating and cold. He had lost about 30 pounds from his thin frame by the time he died.

My Dad was a very proud man. As his disease progressed, his ability to do things for himself decreased. He lost the ability to drive; this was crushing to him. He had been a truck driver for most of his life and now he couldn’t even drive himself to his Dr. appointments. He had to rely on my mother for everything.

Dad went on Hospice November 1st and I went to Billings to see him. I spent the whole drive thinking about what was coming. Once again, selfishly, I didn’t think he would leave so soon. He was so sick and miserable. From statements he made to me and other members of our family, it is clear my father would have availed himself of aid in dying if that choice had been legal in Montana and available to him. But we had heard nothing from the court.

I saw him again three weeks later, the week before he died. When I first saw him, I saw a skeleton of the man I knew. He was so thin his glasses wouldn’t stay on his face. I immediately burst into tears and dad had to comfort me. He asked me how long I thought he would have to endure before he finally died. I couldn’t tell him. I spent those few days trying to find things to comfort him: a pillow so he could sit, something to keep his glasses up. When my husband and I left, he said goodbye to me and meant it. I didn’t say my final goodbyes because I thought I would see him again.

On December 5, 2008, I was packing to come back to Billings to see him again. That was the day Judge McCarter issued her ruling. She wrote, “The Montana constitutional rights of individual privacy and human dignity, taken together, encompass the right of a competent terminally [ill] patient to die with dignity. . . . The patient’s right to die with dignity includes protection of the patient’s physician from liability under the State’s homicide statutes.” My father was sleeping when the news came that he had won his case. He never woke up.

Opponents of letting people make this choice themselves quickly attacked the judge’s ruling. Montana’s Attorney General announced he would appeal the decision to the Montana Supreme Court. We knew the people of Montana agreed terminally ill patients should have the choice my dad wanted and Judge McCarter said the constitution agreed. Now we would have to see what the Supreme Court and then the legislature would have to say.

Click to Watch: Niki Zupanic Testifies in Montana

ACLU representative Niki Zupanic supports the Montana Death with Dignity Act at hearings before the Montana Senate Judiciary Committee.

Niki Zupanic urges the committee to vote YES on SB 167, which would codify physician aid in dying for terminally ill Montanans.