HARTFORD – A public hearing over whether to allow terminally ill patients the ability to end their own lives led to the debate of a larger question: what it means to have a dignified death.
Medical professionals, disability rights advocates, religious leaders and family members of terminally ill patients sat at the Capitol for hours on Monday debating the bill, which has been proposed every year in the legislature for a decade.
Over 570 people and groups submitted written testimony on the bill, including dozens of personal stories about the deaths of their spouses, family members and loved ones.
Proponents said that the bill would affect a small number of people, and that it includes a number of safeguards to protect against patients being coerced into ending their lives.
The bill requires two different doctors to diagnose the patient as terminally ill, and for the patient to attend counseling. The patient then must submit two written requests, fifteen days apart, for the drugs. Each of the requests has to be witnessed by two people who have no relation to the patient, will not inherit anything in the patient’s will and are not employed by the healthcare facility where the patient is being cared for.
State Sen. Saud Anwar, D-South Windsor, chair of the public health committee, said this year the committee had modified the bill to reflect some of the suggestions made in years past, including increasing the age from 18 to 21, requiring that the person be a Connecticut resident for at least a year and mandating the patient be evaluated by a mental health professional. It also requires a person who is prescribed the medication but decides not to use it immediatelyto check in with a doctor every 30 days.
But the additions to the bill did nothing to assuage the concerns of its opponents.
Cathy Ludlum, leader of the organization Second Thoughts Connecticut said she was concerned the law would result in people being denied treatment or given incorrect diagnoses of life expectancy.
“Many [people with disabilities] have survived medical crises in spite of being written off as close to death or assumed to have a poor quality of life,” Ludlum said in her testimony.
Over and over, people who spoke against the bill used the phrase “slippery slope,” saying that they feared the safeguards in the bill could be removed by later legislatures. They referenced the states of Oregon, which recently dropped the requirement that people be residents in the state to gain access to assisted suicide, and Vermont, whose residency requirement is being challenged in court — by one of the same organizations advocating for the bill being proposed in Connecticut. They also mentioned Canada, which has been under scrutiny for what opponents say are “permissive” laws regarding assisted suicide.
“No matter how the bill reads today, we’re not looking at today — we’re looking at five years from now, 10 years, 20 years,” said Ludlum. “And what we pass or don’t pass today is not what we will get in the future.”
But those who spoke in favor of the bill said that their relatives were left without options for a painless death or one without slow deterioration. Some relatives described watching their relatives die gasping for air, or choosing to die of starvation or dehydration.
Kira Philips told the story of her mother, who, three years after being diagnosed with cancer, shot herself in the head in her parents backyard. Philips’ father was the one who found her.
“My mom wished she could have used [medical aid in dying] and even discussed uprooting and moving to Vermont for six months,” said Philips. “But, ultimately, she didn’t have six months — and the radiating spinal pain, chronic sickness and nausea and the fear that she endured about what was to come led her to desperation.”
James Naughton told the story of his wife, Pam, who went through years of chemotherapy, including an experimental trial, all without success.
“After four years, one morning she looked at me and she said, ‘Jimmy, I don’t want to wake up anymore,’” he said. “When your wife, your spouse, a family member … when they say that to you, let me tell you, there is nothing you wouldn’t do to try to help them.”
The personal stories also led to deeper questions about the value of prolonging a life.
“You may have heard testimony today that suggests that suffering must be part of living and that somehow we should all just sort of grin and bear it — that suffering is somehow ennobling and that that is the definition of what dignity is,” said State Rep. Johnathan Steinberg, D-Westport. “I find those who feel that it’s perfectly fine for others to be forced to suffer against their will as both arrogant and insensitive.”
But Rev. James Sullivan, the pastor of Immaculate Conception Church in Waterbury, said that the ending of people’s lives was often the catalyst of forgiveness within families, and prompted conversations that otherwise might not have happened.
“What death does, and that process of dying, whether it be hours or days or weeks or even months, in that process of dying … just being with people in their darkest hours, what happens so many times is healing and reconciliation,” said Sullivan.
Both people in favor of and opposed to the bill criticized the healthcare system and pointed to the need for improvements in the way that hospice cares for patients. And many of the people in opposition to the aid in dying bill said they felt that improvements in palliative care and hospice would diminish the need for patients to seek out ways to end their life.
“That is the way, through the board provision of hospice and palliative care, we avoid the harrowing end of life stories,” said State Rep. Holly Cheeseman, R-East Lyme.
State Sen. Heather Somers, R- Groton, who has spoken in the past about her opposition to the aid-in-dying legislation, proposed a bill to improve the quality of hospice care.
Somers’ bill would require the Department of Public Health to create a pilot program that would provide patients with in-home hospice care through a combination of daily telehealth consultations with a doctor and two in-person visits from a nurse each day. The bill would require insurers to compensate patients for in-home hospice in the same way they would compensate for care in a hospital setting.
But representatives from various hospice organizations said that the type of home care provided in the program already exists. They said there needed to be better education on a national level about the services hospice provides.
Chief Clinical Officer for RVNAHealth Keri Linardi acknowledged that hospice care differed based on who was providing it, and said that hospice care should be considered its own specialization, and that nurses working in hospice should be required to specialize in hospice care within two years of starting in the field.
Karen Enders, the director of Hospice Home Care for the Connecticut Hospice, also said she was concerned about how the bill’s requirements would be fulfilled given the staffing shortages in healthcare. But she agreed about the need for improvements in hospice — she noted that the hospice care in Connecticut was one of the lowest ranked in all 50 states.
Anwar said that far more people would be affected by hospice improvements than by aid in dying.
“There’s a need for hospice education to increase, there’s a need for hospice benefits to improve further, and the individuals who are suffering with severe pain — we need to do a far better job,” said Anwar.