Last Wednesday, March 20, the Connecticut Assembly’s Public Health Committee began its consideration of a bill modeled after Oregon’s Death with Dignity Act. What a day! In my 22 years of legislative work, this hearing was the most grueling — and the most inspiring — I have ever witnessed.  Compassion & Choices volunteers and supporters showed themselves to be as passionate, judicious, intelligent and dedicated as citizens can ever be. They are committed to a world of justice and mercy. And they trust in democracy to make it so.

They came because they want choice and control in their own mortal endings. But mostly, they came for others who could not — their neighbors and loved ones and people unknown to them. They came that others need not suffer against their will, and that all may have the opportunity to face death in comfort and peace of mind. My heart swelled as I sat with them and heard the witness of these decent, altruistic, dedicated people.

The day began early, as aid-in-dying supporters travelled hours to Hartford by bus, car and train to be in line by 7:00 am.  Sign-up began at 9, but being in line by 7 helped ensure an opportunity to speak. The hearing began at 10 and our bill, Compassionate Aid in Dying for Terminally Ill Patients (HB 6645), came up about noon. Representative Betsy Ritter, the bill’s chief sponsor, spoke with eloquence and authority. Other legislators followed, and then the committee shifted gears and heard unrelated bills.

For many hours our supporters kept each other’s spirits up as they sat patiently through testimony about nursing technicians, dental hygienists, something called advance practice collaboration agreements, and tattoo artist licensure.

Some of our valiant and dedicated supporters just had to leave when their bus departed or their backs gave out. But others stayed until 1 am for their chance to speak. Yes, you read that right — they endured this process from 7 am until 1 am without complaint!!

Here are a just few of the heroes:

Shannon Sanford, a Yale-educated nurse who did her masters thesis on Oregon’s Death with Dignity Act.  ”Compassion & Choices were great to me when I was working on my thesis.  I can stay to the bitter end,” she told us. She had to, attending the entire 15-hour hearing as the last person to testify at approximately 1:30 am.

It fell to Shannon to present the committee with letters from all over the state. The stack was nearly a foot high, making a thump on the table.

Placing her hand on this tower of paper, Shannon said:  ”I brought my friends who are all in support of House Bill 6645″.  A legislator asked, ”I have to know, how many people signed letters?”  Shannon had a snappy response despite sitting 15 hours in a hearing room:  ”I stopped counting after 1500.”

Hunt Williams traveled over an hour to the state Capitol and waited twelve more to tell his story.

Hunt told the committee the story of his manslaughter arrest for merely cleaning a weapon his terminally ill friend, John Welles, used when he was dying of cancer. Only due to the overwhelming support and advocacy in his community of Cornwall, Connecticut, was Hunt sentenced to accelerated rehabilitation, a process that took over a year. The committee and the entire room sat in complete silence as they listened to Hunt’s riveting experience.

“Thank you sir, thank you for giving testimony.  I think I was taken aback by what you had to say,” a stunned co-chair of the committee, Senator Terry Gerratana, said.

Gloria Blick, aged 91, is a passionate advocate for end-of-life choice, as is her son Dr. Gary Blick.

When called to testify, Gloria and Dr. Blick held hands and both walked confidently to the microphone and sat together supporting each other.  Luckily, Gloria has not had a significant illness, but with her active volunteerism in the senior community, she has witnessed first-hand the pain and suffering of those at end of life, and it disturbs her greatly.

She made it clear to the committee she had been too active and too well to see her life end in a slow, relentless spiral of deterioration. Nor would she want her family, including Dr. Blick, to suffer unnecessarily with her.  ”I would never want to do that to my son,” she said.

Lillian Kaplan sat for hours waiting for her opportunity to speak out in favor of HB 6645, offering moving testimony regarding the difficult and painful death of her son-in-law Steven Kahn, who wanted to die on his own terms.  Lillian read into testimony a letter Steven wrote prior to his death.

“I am writing to you so you will not have to wonder…I’m not asking for your approval, only that you honor my judgment,” he wrote.

At the conclusion of her testimony, the Senate Chair of the Committee respectfully asked her age:  ”Well, in a year and a half I will be 100.”

Lillian, Gloria, Gary and Shannon and so many others showed themselves to be amazing and inspiring advocates. It is an honor to be able to work beside them for choice and control at life’s end.

Do you know about palliative care, the comprehensive treatment for the very sick, but not for those who are dying?

Some doctors do not.

As a physician, do you feel it is a sign of “failure” on your part, when longtime patients have grown tired of treatments, and simply want comfort as they approach end of life?

Some physicians think it is.

As the population ages, and hospitals prepare to care for more chronically ill patients, more physicians should get acquainted with palliative care, to not only to improve patient care, but as a potent cost-savings tool.

With palliative care, hospitals can avoid needless tests and procedures, in part, because patients no longer want them. Palliative care is the comprehensive treatment focused on pain, symptoms and stress of serious illness, or even spiritual assistance for the very sick. Some studies have shown it can extend life.

Still, although not widely practiced, palliative care is becoming part of the discussion among healthcare leaders to improve care, especially for the elderly.  In May, a panel of healthcare leaders met in Chicago as part of a HealthLeaders Media Breakthroughs session that focused on improving readmission rates for hospitalized cardiac patients. The talks veered off into other topics, among them palliative care, as well as hospice, or end of life care.

“Obviously, it’s probably one of the most complex topics we could discuss,” said Greg Johnson, DO, chief medical officer for Parkview Health, Ft. Wayne, IN, during the panel discussion.  ”I also think that when we talk about end-of-life care, we need to approach it with more curiosity and information than with judgment and direction,” Johnson says.

Although there were almost no palliative care programs in America a decade ago, about 63% of hospitals with 50 or more beds have a palliative care team, according to the Center to Advance Palliative Care. It is likely that palliative care is going to expand, but it is still largely misunderstood, even among physicians.

For those patients who are weary of dealing with their pain, tired of medical procedures, and who want to live their days as fully as possible, palliative care may be the answer. In cases of people even more seriously ill, and possibly closer to death, hospice may be the correct treatment option. Too often, physicians don’t pose the question: Patient, what do you want to do?

Bruce Robinson, MD, MPH, director of the chief of geriatric medicine at Sarasota Memorial Hospital in Florida told me how, too often, physicians may articulate their hopes for patients, even when it’s a terrible illusion.

“The patients want to keep that hope,” he says. “The doctors want to just do what they do and that’s how they make their living, so they are happy when a patient says, ‘I want you to do something. I want to pretend I’m not dying.’ So stuff gets done.”

Other physicians may not endorse palliative care, or even hospice care, because they wrongly feel those programs may reflect poorly on their own work, healthcare leaders tell me. Some doctors may see those programs as symbolic that they have given up hope, that all those procedures, all the plans for their patients, were for naught. That’s too bad.

At the Breakthroughs session, panel member Johnson raised the point that physicians “feel like it’s a failure” to have such discussions involving palliative or end of life care. That shouldn’t be the case, he says. “We have to be willing to follow-up what the patients’ goals are,” Johnson says.

“Because what I’ve seen too frequently is the patient will have stated their goals of care and then somewhere that gets overwritten. And we see the 94-year-old patient that didn’t’ want anything who is on on a ventilator for a month. And that’s a very sad thing.”

The essential question for palliative care is “how do we manage symptoms so the patient can feel as good as possible, and have optimal life experience? The conversation in chronic care management goes a long way,” said panel member Kathleen Martin, RN, vice president of patient safety and care improvement for Griffin Hospital, Derby, CT.

While palliative care is increasing, its generally poor name recognition, among the public, as well as among healthcare workers, including physicians, is a significant obstacle, Timothy E. Quill, MD, a professor of Medicine, Psychiatry and Mental Humanities at the University of Rochester School of Medicine and Dentistry tells HealthLeaders Media.

“Palliative care has a name recognition issue,” Quill says. “About 20% of the public may know what it is, but once people and patients learn what it is, their question becomes: ‘why didn’t I get that earlier, why isn’t that the care for all seriously ill people?’ Hospice care has a higher name recognition, but it’s for people at the end of life,” he says.

While there is some uncertainty what exactly is palliative care, some healthcare facilities are offering both palliative and hospice care programs, which they see as crucial to improve care among the elderly, and offering as many options to them as well as their families.

The Hospice of the Valley, in San Jose, CA, is one of those facilities that serves both populations.  There is an increasing need for mental health or community-based programs to assist the patients, says Sally Adelus, president/CEO of the Hospice of the Valley, told HealthLeaders Media.

Because the scope of care is evolving for the elderly populations, it’s important that physicians work closely with families to consider palliative or hospice care options. The Sutter Health system, a network of doctors and hospitals in northern California, has an advanced illness management program that partners with patients and families to better coordinate care for palliative patients and also consider end of life options, says Brad Stuart, MD, chief medical officer at the Sutter Care at Home in Fairfield, Calif.

Stuart says it’s important that both disciplines (palliative and hospice) “collaborate for the best outcomes we can have.” Much of the focus for improved patient care, especially those in palliative care, is moving toward ” focusing on goals of patients in their own lives.”

Even in the hospice and palliative care world, however, there are “turf” struggles, as in many other areas of healthcare, he says. “We’re trying to change the medical culture. It’s an uphill battle,” Stuart says.  Physicians gaining knowledge about such care is a start, he adds.

It’s making me think about similarities between the movement for death with dignity and LGBT dignity. Like other movements for human liberty, seminal events mark a trajectory toward inevitable success.

1. It starts with consciousness-raising.  As human rights lawyer Sylvia Law describes, one day a light comes on. People experience their own private “Aha!” moment. Then more do, and multiple sparks of recognition illuminate the injustice for all to see.  In the 1970s LGBT advocates worked hard to muster light in the darkness of false assumptions, degradation and violence.

For end-of-life choices, common wisdom was that with death, comes suffering.  We’ve heard doctors tell a family, “We all have to suffer some, don’t we?”  In our movement sparks first fly when people witness end-of-life agony and indignity and think, “This is not right.” Grief magnifies outrage, and awareness dawns that American law and medicine fails us at life’s end.

2. Soon fear, shame and guilt no longer keep outrage in check. People in our movement share this with LGBT communities.  We all have stories of deaths of loved ones. Maybe we shrank from the bedside and let doctors continue with tubes, needles and machines long after any good could come of it. Maybe we heeded an urgent plea to increase the morphine and speed death’s advance. Or maybe we didn’t and feel guilty for that. Maybe Dad shot himself when he was dying of cancer and the family lives with that trauma.

Powerful forces conspire to keep talk of death taboo. We’re told it’s wrong to seek the relief of death when cancer’s final agonies take hold.  But telling our stories at kitchen tables, church basements and community gatherings turns fear into courage, grief into action. My most moving experiences come when we open a conversation about end-of-life choices, see pent-up emotion flood the room and see how eagerly people sign up for advocacy and public service.

3. The Vatican fights both movements.  Catholic hierarchy uses its political power to oppose both movements. With hysterical doomsday rhetoric, it denounces gay and lesbian human rights as an “ideology of evil” and the movement for end-of-life choices as a “culture of death.”  To defeat Death with Dignity bills, local bishops have deployed their lobbyists and issued threats of shunning and denunciation from the pulpit to non-Catholic lawmakers and denial of the sacrament of communion or excommunication, to Catholic ones.  In a surprising turn of events, Roman Catholic leaders in Maine announced they will play no role in fundraising, staffing, advertising, or campaigning against marriage equality.

I hope Catholic leadership’s decision to stay its hand in Maine arises from a calculation of changing sentiment in society.  If Gays and Lesbians are beyond religious oppression it’s because they are no longer vulnerable to shame and guilt for who they are or the rights they seek. Today lawmakers are more likely to embrace their Gay and Lesbian sons and daughters publicly than abandon them in silence and vote against their liberty.

If the pattern holds, it won’t be long before lawmakers are telling stories of the tragically painful deaths they’ve witnessed, rejecting the rhetoric of shame and voting courageously to empower people with choices at the end of life.

Both the Vanacores had terminal illnesses. Thomas, 73, had advanced cancer and Joan, 70, was dying of Alzheimers. We can’t know for certain what Thomas was thinking when he shot his beloved wife of 38 years in the head and turned the gun on himself in the sunroom of their home. But as their story unfolds, it repeats a pattern and illuminates truths all too familiar to those who fight for dignity and choices at the end of life.

Here is that truth in a nutshell: Many people with terminal illness want desperately to meet death on their own terms. Facing imminent disintegration of body and mind, they wish their passing to reflect the values and beliefs of a lifetime and avoid prolonged, needless suffering. The laws of most states prevent them from planning a peaceful, intended death, so they resort to violent means. Some jump from balconies and some drive into highway abutments. But most turn to America’s icon — the gun.

Shame, shame on a society that forces such a Hobson’s choice. These are our elders, the generation that fought the war for democracy and freedom and they deserve better. Their actions reflect values that form the very backbone of America. Among these are a deep sense of responsibility for themselves and others, courage to face the hard facts of a tough situation, and the practical ability to take charge of their fate. Many also act from extreme altruism and desire to spare their families the burden of a long and difficult demise. Courage, altruism, responsibility — those who would condemn the Vanacores don’t appreciate the force of these bedrock American values.

The Vanacores join a line of decent, distinguished couples whose character led them to similar actions at the end of their lives. World War II Admiral Chester Nimitz, Jr. and his wife planned their death together and left loving notes for their family. In 1975 world famous theological scholar Henry van Dusen and his wife faced declining health and took overdoses of sleeping pills to end their lives. A letter for their three sons and said they had led happy lives, and were not afraid to die. Van Dusen’s successor as President of Union Theological Seminary commented that “He had a very strong belief in immortality. His attitude was that, when your time is up, when you have lived out the possibilities, it is all right to stop, and to go on to the next life.”

Why doesn’t society allow people who share Van Dusen’s conviction to pursue it openly and die in peace with medication prescribed by their doctor? Forcing people to plan in secret and act alone prevents a careful medical evaluation and the opportunity for palliation and probably shortens their lives even further. As Nobel laureate Percy Williams Bridgman, dying of cancer, wrote about his own self-inflicted gunshot, “It isn’t decent for society to make a man do this thing himself. Probably this is the last day I will be able to do it myself.”

When I think of the character of such people I always recall the story told by a woman from the little town of Sedro Woolley in Washington State. She described her husband as a person who “took care” of whatever needed doing. He took care of their rural home, and he took care of her. Dying of cancer and suffering excruciating pain, he still looked out for her needs. The day he died he spent the morning sharpening all her kitchen knives. Then he embraced her tenderly, went out to the yard and shot himself there, so it wouldn’t make a mess in the house.

The people who take pride in “taking care” deserve better from us. They deserve real choices and permission to die in peace and comfort, with the same honor and decency with which they lived their lives.

Aid in dying, the opportunity for the terminally ill and mentally competent to have the choice of life-ending medication prescribed by their doctors, is legal only in Oregon, Washington and Montana. Connecticut should turn the tragedy of the Vanacore case into hope and comfort for those who follow. The case in litigation, Blick v. Connecticut, takes the first step toward that hope.

HARTFORD — The question of whether a doctor can be charged with manslaughter for helping a patient end his life came before a Superior Court judge Monday.

The state, represented by Associate Attorney General Perry Zinn-Rowthorn, sought to persuade Judge Julia Aurigemma that a suit by a right-to-life group should be dismissed.

On the other side, Daniel Krisch, representing two doctors who sued the state, argued a doctor helping a terminally ill patient die with dignity should not be arrested under the state’s assisted-suicide law.

The law says helping someone commit suicide is second-degree manslaughter, a Class C felony. The plaintiffs claim a doctor prescribing medication to a terminally ill, mentally competent patient is providing end-of-life care, not aiding suicide.

Zinn-Rowthorn said the suit, seeking a declaratory judgment from Aurigemma, is improper because it is asking the judge to legislate. Ruling for the doctors, he said, would “risk serious harms to public health and it would intrude on the legislators’ prerogative” to decide public policy.

Among Zinn-Rowthorn’s reasons were that there is no patient who is in imminent need, so the medical state of anyone requesting this assistance is unknown.

He said the General Assembly has refused to change the law to make an exception for doctors, but a bill introduced last year had “14 pages of definitions, of restrictions, oversight, check that were built into the legislation.”

There would be no such protections if aid in dying was approved by a judge’s order rather than legislation, he said.

Krisch argued “there is a growing consensus” in the medical community differentiating suicide from aid in dying. “This is an appropriate medical treatment option for patients to be able to discuss with their doctors,” he said.

He said the doctors involved have had patients request medication to end their lives, people who are “suffering real, horrible diseases … facing very real, very hard choices.”

Watch the video of patient Sheldon Smith at the New Haven Register>>

Krisch said if doctors were allowed to prescribe lethal medications the legislature would create needed safeguards. “Doctors are not going to go around willy-nilly. Doctors are bound by medical ethics,” he said.

“It won’t be the Wild West of aid in dying.”

READ OUR PRESS RELEASE HERE>>