The Middletown Press (Middletown, CT)
A ‘good death’
Forum at Quinnipiac to focus on planning for end-of-life decisions
When Nancy Yedlin’s father was dying of cancer in a New Jersey hospital, she and her family couldn’t have anticipated the stress they’d undergo as his life neared its end.
“He had an advance directive. He had a living will to say what he wanted or didn’t want at the end of life, and he had cancer. … But we could not in a family meeting get his oncologist to talk about palliative care or hospice,” Yedlin said.
Yedlin, who lives in New Haven, set up a meeting with a palliative care doctor and her family, but on the day of the meeting received a call that her father, Benedict Yedlin, 81, a belly gunner during World War II, was being moved to intensive care.
As she, her stepmother, brother, sister and sister-in-law were meeting, a code sounded and a medical team came “running down the hall with this equipment going into the ICU,” prepared to insert a breathing tube and open her father’s chest if his heart stopped.
It was not what Benedict Yedlin would have wanted. “He didn’t want any lifeprolonging treatment if he had a terminal illness,” Nancy Yedlin said. “We basically said, ‘Don’t do it’ and you could see a little bit like their shoulders slumping. This is not what they’re trained to do.
“His breath got really fast and literally, (within) three minutes of us all touching him and being with him, the breath went out of him.”
Yedlin said she would have preferred to have a conversation with her father’s doctors when he first entered the hospital. “I think if the palliative care physician hadn’t been there at that moment and hadn’t been able to interject what she knew about his wishes, I don’t know what would have happened with my dad,” she said.
That experience in 2004 impressed on Yedlin the need for family members to know what each other’s wishes are and to communicate them to doctors and other caregivers.
“It was probably a few years after my father died that my family felt comfortable talking about what happened,” Yedlin said. “There’s still a stigma that you don’t love your loved one enough if you’re willing to honor their wishes.”
When her mother, Rita Yedlin, died in 2016 at age 90, the experience was much different. “She had a real slow decline, but we had a lot of opportunities to talk about what she wanted … and we were able to check in with her over the last few years to say, ‘Hey, Mom, are you sure that is what you want?’ ” Nancy Yedlin said.
“She did not want to be transferred to a hospital if something acute happened to her. She really just wanted pain management at the end of her life and comfort care where she was living … and that’s what she had.”
As the holidays approach, the greatest gift people can give their family members is telling them how theywould like to die. To make that gift most worthwhile, they should know as much as they can about what their options are, including the availability of palliative care and hospice care during a prolonged or terminal illness.
Spreading that message is the goal of Care Decisions Connecticut, a program begun in 2016 by the Connecticut Hospital Association to improve end-of-life care and quality of life for those with serious illnesses.
The group — as well as organizations such as the Connecticut Association for Healthcare at Home, which represents 26 of the 31 hospice agencies in the state — would like to overturn misconceptions about what palliative care and hospice are and when patients may turn to them.
To help convey the message that families need to discuss end-of-life decisions, Care Decisions Connecticut will hold a conference Tuesday at Quinnipiac University featuring WNPR’s Colin McEnroe and experts in the field.
“The issue at hand is helping individuals contemplate the type of care that they want at the end of their life before they get to the end of their life,” said Dr. Adam Silverman, chief population health officer of Trinity Health of New England and co-chairman of Care Decisions Connecticut.
But the conversation shouldn’t be put off until a family member is facing a terminal illness. “It is for anybody at any age to have this conversation with their loved ones,” said co-chairwoman Karen Mulvihill, a nurse practitioner who is network director of palliative care for the hospice consortium.
Death is a part of life
“I think in the United States, especially, it’s important to always be young and there’s discomfort to talking about death, and death isn’t considered a part of life,” said Tracy Wodatch, vice president at the Connecticut Association for Healthcare at Home, based in Wallingford. “Learning how to have a conversation is not just about talking about death but it’s about what’s meaningful in life and what are your goals.”
“I think that sense of guilt that families feel is that we haven’t socialized this; we haven’t made it normal, even though we’re all dying from the moment we’re born,” Silverman said. “There’s this concept of the health care provider being the hero,” he said, fed by media portrayals of doctors “swooping in at the last minute, rescuing somebody from the jaws of death.”
In fact, “there are studies that show that certain populations of patients that choose a palliative approach … actually live longer,” he said.
The best time to talk about one’s treatment wishes shouldn’t be in the hospital, Wodatch said. “It shouldn’t be when you have an illness. It should be when you’re healthy,” she said. “Most people’s conceptions include an old, gray, feeble body that has lived a long full life and can still make decisions on their own.”
Elizabeth Beaudin, senior director for population health at the Connecticut Hospital Association, and facilitator for Care Decisions Connecticut, talked about how her sister, who died of a brain tumor at age 37, encouraged her family to have the discussion. “She wanted to talk very directly about death and we were able to do that,” Beaudin said. “She knew exactly how she wanted to handle things. There were treatment options and she didn’t want any of them.”
The ability to discuss how we want to die is “largely about having conversations about life and what’s important to you ... and that helps guide you in what kind of care you want and how to communicate that to family members and providers,” Beaudin said.
The result, she said, can be a “good death. Some folks would think that’s an oxymoron,” she said.
Seeking care sooner
Avoiding talking about death keeps families and doctors from bringing up the options of palliative and hospice care, with too many believing them available only at the very end of life.
A recent Yale School of Medicine study found that many patients had less than two weeks to live when hospice care was enlisted, and that quality of life would be improved if hospice was called in sooner. (Medicare covers hospice care when a patient has a life expectancy of six months or less.)
According to a report by Hospice Analytics of Colorado Springs, Colorado, Connecticut ranks last in length of stay in hospice care, with 36 percent staying less than seven days.
Care Decisions Connecticut’s goal is “to empower people to make decisions that are important to them,” Wodatch said. According to another study, “80 percent of people say if they’re seriously ill they would want to talk to their doctor about medical treatment toward end of life. Seven percent report having had the conversation with their doctor.”
She said there is a billing code doctors can use when a patient makes an appointment to talk about end-oflife care, so that it’s covered by insurance.
“When it comes to getting palliative care involved … generally the physicians are waiting for the families to ask … and the families a lot of times are waiting for the physician to have that conversation,” Mulvihill said.
“Families or physicians still think that palliative care is hospice care and they’re one and the same, so they’re afraid to bring up the word ‘palliative care’ because they think ‘hospice,’” she said.
Hospice care, which may be offered at home, in a health care facility or at a standalone agency such as Connecticut Hospice in Branford, involves a team that may include doctors, nurses, aides, a chaplain, a social worker and volunteers, “all with a focus of helping the patient and the family, and it’s about quality of life,” Wo datch said. “Palliative care should come much earlier” to treat the side effects of cancer treatments, for example, she said.
“I think one of the roles of having palliative care involved early in the diagnosis of a serious illness is really to make sure that hospice referral is made at an appropriate time and not too late,” Mulvihill said. “So when the time comes, they’re not scared to go into hospice.”
The important point is that the patient’s wishes be honored, whether they include wanting everything possible done to keep them alive or a do-not-resuscitate order.
“We’re not pushing one decision over another,” Silverman said. “We all have patients who come to us and say, ‘Hey, I want you to do everything,’ and we’ll do everything unless it becomes futile or we’re doing harm to the patient.”
One option available to patients is a palliative care physician, who specializes in pain management and keeping a patient comfortable, whether the patient is suffering a terminal illness or is simply suffering from intense pain.
“There’s really no reason that somebody who’s critically ill, whether they’re dying or not … that the palliative care physician shouldn’t be part of the conversation,” Yedlin said. “We had to use our own kind of networks to involve the palliative care doctor.”
Taking action
Once decisions are made, an advance health care directive, or “living will,” should be created and a health care representative appointed whom the patient trusts to follow his or her wishes. Neither requires a lawyer and forms can be found on the state attorney general’s website. Family members and doctors should have a copy.
There is also a new form, Medical Orders for Life-Sustaining Treatment, that is signed by a physician and contains the patient’s directives in a standardized form. Information on MOLST can be found on the state Department of Public Health’s website.
The Care Decisions Connecticut forum will be held at the Frank H. Netter MD School of Medicine at Quinnipiac University starting at 11 a.m. Tuesday. It is free and open to the public. Register at www.CareDecisionsCT.org.
In addition to McEnroe, who will share personal stories about people’s endof-life decisions, the Rev. Rosemary Lloyd, adviser to faith communities for the Conversation Project at the Institute for Health Care Improvement, will discuss how values should be incorporated into end-of-life decisions, and Probate Judge John J. McGrath Jr. of the Windham-Colchester probate district in Willimantic, will join a questionand-answer session.