End-of-Life Choice, Palliative Care and Counseling

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A Message From Connecticut

Hello friends,

As you may have heard we have been unable to move our bill from the Public Health Committee, but we will not go quietly and here is why we will continue this fight:  

We know inaction has consequences.  It means more end-of-life suffering for thousands of terminally ill Connecticut residents, including those who have been denied the peace of mind knowing this choice is available. Moreover, we have polling on our side, history on our side, but most importantly, we have you on our side, and you make passage of a permissive end-of-life choice bill in Connecticut inevitable.

You sent thousands of e-mails and made calls to key legislators on the Public Health Committee to beat back over 10 lobbying firms hired by the opposition. You forced the Public Health Committee to convene a public hearing and came in droves to the Capitol to make your voice heard.

We are so proud of you and all of our legislative champions in Hartford: Attorney General George Jespen, Comptroller Kevin Lembo, Healthcare Advocate Victoria Veltri, Deputy Speaker Betsy Ritter, Senator Gary Holder-Winfield, Senator Ed Meyer and Representative Phil Miller.

Please take a few seconds to send a quick e-mail to thank them by
CLICKING HERE.

We’ve done all of the work for you. Just CLICK HERE.

Marisa and I cannot thank you enough for all you did this year – the work isn’t done, the fight isn’t over, and we look forward to working with you in the weeks and months ahead to make sure that we can bring aid in dying to Connecticut.

Best,

Tim Appleton signature.jpg

Tim Appleton

Compassion & Choices – Connecticut Campaign Manager

Advocates Lobby For Aid In Dying Legislation in Connecticut

by Hugh McQuaid | CT News Junkie | Jan 29, 2014

HUGH MCQUAID PHOTO

Portraits of “aid-in-dying” supporters will be displayed in the State Capitol for two weeks beginning Friday as part of this year’s push for legislation to allow terminally ill patients to legally end their lives.

Advocates of the proposal announced the new campaign to legalize the practice at a Wednesday morning press conference in the Legislative Office Building.

The photos will hang along the State Capitol concourse from Jan. 31 to Feb. 14 and feature advocates seeking legislation to permit terminally ill patients in Connecticut to end their lives with the help of a doctor. Each picture also will include a quote like “Quality of life includes peaceful death.”

Permitting a doctor to prescribe drugs to end the life of a terminally ill and mentally competent patient is legal in only a handful of states. Vermont, Oregon, Washington, and Montana all have laws permitting the practice. A court decision from earlier this month could make New Mexico the fifth state in which it is legal.

A group called Compassion and Choices Connecticut is hoping build on an effort that began in this state last year and see a bill raised during the legislative session that begins next week.

Rep. Betsy Ritter, D-Waterford, and other lawmakers raised similar proposals last year which resulted in the first public hearing on the topic before Connecticut’s legislature. The hearing was widely attended and drew testimony from residents both for and against the law.

Ultimately the bill was never passed out of the Public Health Committee. Ritter said she’s urged the committee’s leadership to raise the bill again this year but that decision has yet to be made. Ritter and other supporters said it will take time for lawmakers to consider the issue. More

Dedicated to a Cause

by Barbara Coombs Lee
March 26, 2013

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.

Palliative Care Deserves Physicians’ Attention

By Joe Cantlupe
HealthLeaders Media
July 19, 2012

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.

Two Movements Approach the Tipping Point

After years of gains and setbacks, the national movement for same-sex marriage is enjoying a period of remarkable success.  Massachusetts and Connecticut became first adopters in 2004 and 2005 and that came after twenty years of advocacy. Turmoil followed, especially in California. But in 2009 three states (Iowa, Vermont, New Hampshire) approved same-sex marriage. New York followed last June, and now the Washington and Maryland legislatures have acted in quick succession.  Delaware’s governor predicts his state is not far behind.

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 movementsCatholic 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.