End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

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San Mateo Daily Journal publishes story about C&C advocate Jennifer Glass’ painful passing

By Katie Wingo

With deep sadness, Compassion & Choices bid farewell to our close friend and ally, Jennifer Glass, on Aug. 11. She worked tirelessly to pass California’s End of Life Option Act until she died from stage IV cancer. Unfortunately, the California legislature did not pass the bill in time for Jennifer to utilize the end-of-life option she so tenaciously fought for: medical aid in dying. Her hometown newspaper, The San Mateo Daily Journal, published a touching story about her advocacy work.

The paper interviewed her husband, Harlan Seymour, and her sister, Mavis Prall, about Jennifer’s end-of-life experience. She opted for palliative sedation. The process involves medicating the person into a coma, then withholding liquids and nutrients until death occurs. Opponents of the End of Life Option Act often claim that medical aid in dying is an unnecessary option for dying patients who have access to proper palliative care, and if necessary, palliative sedation. But Jennifer’s family said palliative sedation was not as peaceful an option for her.

 “As her lungs filled with fluid making breathing difficult and her pain increased, [Jennifer] opted to undergo palliative sedation.

“It took her more than five days to die, a disheartening time marked by her awakening from the coma in a panic one evening,” Seymour said.

“By the time she started palliative sedation, she was in so much pain, she really couldn’t say goodbye to people. If there was an end-of-life option [of medical aid in dying], she could have started earlier, even just one day, she could have said goodbye to her loved ones and had a quiet death. Palliative sedation is really just a slow motion version of what the end-of-life option [of medical aid in dying] offers. Instead of a seven-day, dragged-out death in a coma, it’s a death that could just last a few hours and allows for a better ending with one’s family … It would have been a great comfort to her if she had the choice to end her life in a faster manner. She would have suffered less.”

Prall also spoke about her sister’s experience, saying in the C&C news release:

“She did not want her loved ones to have to watch the life drain from her over a five-day period, nor to watch her lose all dignity as her body slowly shut down. Members of the California Legislature should be aware that their inaction has painful consequences. I urge them to pass the End-of-Life Option Act this year.”

C&C’s California Campaign Director Toni Broaddus addressed the legislature’s inaction in the San Mateo Daily Journal story:

“With Jennifer, [palliative sedation] did not work as effectively … It’s really important for people to understand that in reality, palliative sedation does not work for everyone and those folks need another option. Medical aid in dying is that option.”

We are grateful we got the chance to fight alongside Jennifer and learn from her experience, and vow to continue fighting in her honor for passage of California’s End of Life Option Act to provide relief to other terminally ill Californians.

You can read the full San Mateo Daily Journal article by clicking here.

California Efforts Unyielding

jenniger glass 1
Jennifer Glass and her husband, Harlan

Our California team, busily refining a new strategy to pass the End of Life Option Act, suffered a loss this week: the death of dedicated advocate Jennifer Glass. Prolific and outspoken champion of the right to aid in dying – and revered ally of Compassion & Choices – Glass passed away at her home in San Mateo with her husband Harlan by her side.

Glass was diagnosed with an advanced form of the most common type of lung cancer seen in nonsmokers in 2013, just four months after her wedding. She pursued every available option to extend her life, and she succeeded for two years. Even before joining Compassion & Choices’ California campaign, Jennifer used her communications savvy to bring attention to the issue. She wrote a column about living with lung cancer, “At the Top of My Lungs,” for The Huffington Post, and her story appeared in dozens of media outlets including People, The Today Show and NBC News. Before she died, Glass stated her final campaign request: that the fight to authorize medical aid in dying continue. More

Volunteer Spotlight: Rev. Gillian McAllister

Gillian-McAllisterLifelong New Jerseyan Reverend Gillian McAllister, a nondenominational minister since the ‘90s, “really wanted to get involved in something that helped” once she retired in 2011. Her training as a nurse, career as a bodily injury adjuster in the insurance industry and the difficult cancer deaths of several loved ones – including her husband in 2008 – drew her to volunteer in hospice care and with Compassion & Choices.

“My personal spiritual belief is that birth and death are the same; they’re transitions within the infinity of the Divine. That, for me, provides a tremendous amount of peace,” she says. But she realizes that comfort is not universal. “Someone with whom I had been working for over a year died a month ago alone with his fears and concerns. He had reached a point where he wanted to die but couldn’t have that conversation with his family, as they were not yet at a point where they could let go so both sides were hurting terribly. It was an uncomfortable conversation that each was afraid to bring out openly for fear of hurting the other.” More

Help Get End-of-Life Conversations Covered

cms“Roughly 25 million Americans have been subjected to unwanted medical treatment, and that means we have a healthcare system that does not listen to patients,” said Compassion & Choices National and Federal Programs Director Daniel Wilson in a recent article. Now two important initiatives are underway that would work in concert to remedy this issue, and you can help ensure they succeed.

The Centers for Medicare and Medicaid Services (CMS) proposed policy changes in July to reimburse physicians for having advance care planning discussions with their patients.  And the Care Planning Act of 2015, sponsored by U.S. Senators Mark Warner (D-VA) and Johnny Isakson (R-GA), would create additional layers of assurance that patient wishes will be honored across a variety of settings. It brings in loved ones and healthcare representatives to understand and support the choices the patient makes, and even allows for the training of people in the patient’s inner circle of family and caregivers to help implement the plan when the time comes. More

Advocate Jennifer Glass Dies Before Legislature Enacts End of Life Option Act

San Mateo Woman’s Death Highlights Urgency for Legislature to Pass Bill

Jennifer Glass speaks at the introduction of SB 128.

(San Mateo, CA – Aug. 13, 2015) Jennifer Glass, a national end-of-life options advocate from San Mateo, Calif., passed away Tuesday night, Aug. 11. Glass, 52, died at home from the most common type of lung cancer seen in nonsmokers.

Before she died, Glass stated her final campaign request: that the fight to authorize medical aid in dying continue. Glass spoke eloquently and passionately at the Jan. 21 news conference in Sacramento to introduce the End of Life Option Act (SB 128) that would authorize medical aid in dying for terminally ill adults in California.

“Lung cancer is an ugly way to die. I would find great comfort in knowing I had another option,” Glass said (see news conference video here: bit.ly/JenGlassSB128introNewsConf). “We need your help so that every Californian knows what’s at stake for each of us as individuals.”

“No one was a stronger supporter of the End of Life Option Act than Jennifer Glass,” said Compassion & Choices California Campaign Director Toni Broaddus. “It is a crying shame the Assembly Health Committee failed her by holding up the bill. But we can honor her memory by continuing to fight to authorize medical aid in dying for other terminally ill Californians who urgently need this end-of-life need option to relieve unbearable suffering.”

“I am deeply saddened by the news of Jennifer’s passing,” said California Senate Majority Leader Bill Monning, co-author of the End of Life Option Act. “My heart goes out to her family. We will continue to pursue Jennifer’s commitment to establish the right of terminally ill patients to have all end of life options made available to them.”

Before joining Compassion & Choices California campaign, Jennifer used her communications savvy to bring attention to the issue. She wrote a column about living with lung cancer, “At the Top of My Lungs,” for The Huffington Post. Her story was featured in dozens of media outlets, including People, The Today Show, Good Housekeeping, NBC News, Oprah, The [London] Daily Mail, [Japan] Mainichi Shimbun and South China Morning Post. Jennifer was a tireless advocate for passage of the End of Life Option Act until her dying breath. Despite her declining health, she was scheduled to testify in support of SB 128 before the Assembly Health Committee on July 7, but the hearing was cancelled (you can read the written testimony she prepared at: bit.ly/JenGlassSB128test).

At Jennifer’s request, Compassion & Choices has set up special web pages so people can donate to C&C’s national efforts to pass aid-in-dying laws, www.compassionandchoices.org/jennifer, and send letters to legislators, www.compassionandchoices.org/jennifer-glass. The deadline for the California legislature to act is Sept. 11. The state Senate passed the legislation in June.

In January of 2013, Jennifer began aggressive chemotherapy and radiation, and took oral chemotherapy medication that had difficult side effects but contained the cancer. However, in June 2015, a CT scan (X-ray computed tomography) showed her cancer had spread to her lungs, liver, abdomen, pelvis and brain. She no longer could tolerate chemo and entered hospice on July.

“Jennifer said, ‘I am doing anything I can to extend my life. No one should have the right to prolong my death.’ But she lost the fight to die on her own terms,” said her husband, Harlan Seymour, who married Jennifer on August 25, 2012, only four months before her cancer diagnosis. He took her picture every day for a year after that date to chronicle her physical changes during chemo and radiation treatment (see video here: bit.ly/JenGlassCancerTreatmentPhotos).

“Jennifer underwent palliative sedation because her symptoms had become unbearable. She was unable to breathe and in enormous pain. Unfortunately, she was not able to take advantage of the end-of-life option — medical aid in dying — that she gave her precious time to make available.”

Palliative sedation involves medicating a person with end-of-life symptoms into a coma. Nutrition and fluids are withheld until the patient dies from the disease or dehydration. It can be a peaceful end-of-life option with proper medical supervision. However, the person can linger for days or weeks until death occurs. In Jennifer’s case, it took five days. She died at home, but in most cases, palliative sedation requires hospitalization. Some healthcare providers refuse to offer this option.

In contrast, medical aid in dying enables terminally ill adults facing unbearable suffering to obtain a doctor’s prescription for medication that they can choose to take at home to die peacefully in their sleep (in as little as 30 minutes, as in the case of Brittany Maynard), with their loved ones by their bedside.

“I have enormous love and respect for my sister, so I will carry on her mantle to ensure that other terminally ill adults do not suffer needlessly at the end of life,” said Mavis Prall, Jennifer’s sister, who is a healthcare communications professional. “Palliative sedation is not the quick, peaceful option Jennifer wanted to end her intolerable suffering.”

“She did not want her loved ones to have to watch the life drain from her over a five-day period, nor to watch her lose all dignity as her body slowly shut down,” said Prall. “Members of the California legislature should be aware that their inaction has painful consequences. I urge them to pass the End of Life Option Act this year.”