For the first time in Connecticut’s history, the General Assembly’s Public Health Committee allowed a legislative hearing about a physician-assisted suicide bill.
H.B. 6645 aims to allow physicians the ability to prescribe life-ending medications at the request of mentally competent, terminally ill patients. Patients would have to self-administer the drug.
Connecticut’sCBS affiliate reports that because Democratic State Sen. Ed Meyer of Guilford received so many phone calls supporting “Death with Dignity,” he chose to author the bill, which he insists is both compassionate and cautious.
“The bill that we’re hearing today, for example, requires two different physicians to certify under oath that the person is terminally ill, likely to die within six months and is mentally competent to make an informed decision about ending his or her life,” Meyer told WCBS 880.
Washington, Oregon and Montana have already approved the legislation known as “Death with Dignity.”
“If the legislators see the bill as providing a choice, an intelligent choice for people making an informed decision to end their life and end the misery and pain they’re going through at the end of life, I think the bill will go forward,” Meyer said.
However, the bill faces strong opposition from religious and social organizations, such as the Family Institute of Connecticut and Second Thoughts Connecticut. Such opposition could hold-up the bill’s passage.
“We will be killing our vulnerable parents and grandparents through public policy,” said Teresa Wells, a nursing home administrator, according to the Hartford Courant.
The Catholic Church has also been a vocal critic. The Church cites the lack of wait time between the necessary oral and written requests for drugs. Other states require a 15 day wait.
Meyer said he remains open to suggestions.
Proponents of the bill argue it would ensure individual freedoms at the end of life. “The deep yearning for increasing autonomy for patients themselves to have a voice, I think now it’s reaching a tipping point all across the world,” Compassion and Choices’ Barbara Coombs Lee told CBS. “I think the Baby Boomer generation has something to do with that.”
A similar bill was proposed in 2009, but it failed to garner a hearing. Connecticut has banned assisted suicide since the late 1960s.
Read the bill at Connecticut’s General Assembly Web site
The POLST Illinois Task Force with the Illinois Department of Public Health announced the release of the new Illinois Department of Health Uniform DNR Advance Directive, known as the POLST form.
POLST form
POLST was developed in Oregon in the 1990s, and now 14 states have POLST programs. Twenty-eight states are considering the use of POLST forms.
POLSTs are more detailed than conventional living wills or advance directives. They allow patients to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. Such forms are intended for patients in their last year of life, and they can follow patients across care settings and direct doctors to provide or withhold lifesaving treatment.
Life Matters Media’s Daniel Gaitan shared his thoughts on the Oscar-nominated “Amour” and the importance of advance care planning in The DePaulia.
Amour
‘Amour’: Discussing death and dying
How do you care for a suffering loved one? “Amour,” the sublime French-language nominee for best picture directed by Michael Haneke, encourages discussion surrounding the end-of-life by highlighting the pain one aged couple faces navigating caregiving, medical treatments and death.
Amour’s first scene takes place in an elegant Parisian apartment. Firefighters bash in the doors and cover their noses from the smell of human decay. They proceed to the bedroom, only to find a woman’s corpse wreathed in carefully arranged flowers. The rest of the film is flashback.
The apartment belongs to Georges and Anne, a posh couple in their eighties who care deeply for each other. They have been married for decades and are finally enjoying the rewards of having lived successful music careers. However one morning, Anne (Emmanuelle Riva) goes into a catatonic state during breakfast. This state triggers a flurry of health problems, including paralysis. Georges (Jean-Louis Trintignant) dutifully does the best he can to care for her. He promised he would not put her in a nursing home or let her die in a hospital. The film suggests they do not have advance care directives, a living will or power of attorney. If they did, the film would have ended much differently.
Planning for the end of life
Advance care planning involves learning about the types of decisions that need to be made in case of a medical crisis and aims to ensure an individual’s desires are carried out.
One common form of planning is a living will, a written document that tells doctors how a patient wants to be treated if incapable of making decisions about emergency treatment, according to the National Institute on Aging. A power of attorney is a legal document that names a healthcare proxy, someone to make medical decisions on behalf of a patient unable to do so.
Little is known about the advance care plans of Colombian, Mexican and Puerto Rican women living the in the U.S., according to a new study commissioned by the University of South Florida. Researchers sought to identify decision-making patterns among Latinas and found language proficiency and health care access make it harder for them to plan for their end of life care.
Advance care planning involves learning about the types of decisions that might need to be made in case of a medical crisis or the end of life and aims to ensure an individual’s desires are carried out. Advance care planning is especially important for Latinas who experience social inequalities, discrimination and language barriers, the researchers note.
Researchers recorded Spanish language interviews with 45 Latinas in Central Florida who had been diagnosed with cancer. The majority of women, 35 in all, identified obstacles to information about planning, including insurance and financial factors. Only 10 women had completed at least one form associated with advance care planning. Only three of those 10 women had completed a living will, designated a health care surrogate and an enduring power of attorney.
Of the ten women who had taken steps to plan, four were Colombian, five were Puerto Rican and one was Mexican. Among the Colombians, three had only a living will and one had a living will, a designated surrogate and an enduring power of attorney. Two Puerto Rican women had a living will, a designated surrogate and an enduring power of attorney, two had just a living will, and one had both a living will and power of attorney.
Advance care planning among Colombian, Mexican, and Puerto Rican women with a cancer diagnosis
Another 13 women stated they knew of advance care planning but had not completed any forms. According to researchers, “none [of the 13] were able to satisfactorily articulate the definition of ACP,” hinting at miscommunication within care settings.
A living will is a written document that tells doctors how a patient wants to be treated if permanently unconscious or incapable of making decisions about emergency treatment, according to the National Institute on Aging. A power of attorney is a legal document that names a healthcare proxy, someone to make medical decisions on behalf of a patient unable to do so.
Some Mexican women acknowledged the nature of their cancer diagnoses and informally discussed their wishes with family members, an unrefined form of planning. They trusted that their desires would be fulfilled, indicating a preference for family discussions instead of clinical ones.
The study, also supported by the Division of Population Sciences and the H. Lee Moffitt Cancer Center and Research Institute, aims to remedy the lack of information available on Latinas.
“The rapid growth among these three groups in the USA highlights the urgency of addressing ACP and decision making, given the increased risk of cancer among Colombians, Mexicans, and Puerto Ricans residing in the USA,” the researchers wrote. Cancer is the second leading cause of death among Latinos in the U.S., accounting for some 20 percent of deaths.
Researchers conclude that knowledge gap exists between the Latinas they studied. This gap stems perhaps as a result of immigration/migration history and lower levels of education, English language proficiency and income. Latinas who have been in the U.S. for a longer period of time knew more about advance care planning. More Spanish language forms and simpler language, they say, may help more Latinas create advance care plans.
The Physician Orders for Life-Sustaining Treatment (POLST) program, designed to improve end of life care in Illinois, is on its way to implementation. Health care professionals met at Rush University Medical Center this week to discuss the form’s development and strategies for raising public awareness.
Julie Goldstein, M.D., a clinical ethicist and palliative care physician at Advocate Illinois Masonic Medical Center, provided the audience with hypothetical scenarios the POLST program form could remedy.
POLST program forms are more detailed than conventional living wills or other advance directives. They allow people to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. Such forms are intended for people who are likely in their last year of life. They can follow patients across in-state care settings and direct doctors to provide or withhold life-sustaining treatment in emergency situations.
The forms aim to more quickly direct doctors to a person’s wishes and eliminate confusion about what patients would want in the case that they are medically incapacitated and unable to communicate their wishes. The forms provide instructions in the case of a cardiopulmonary arrest (the person has no pulse and is not breathing), the degree of medical intervention they would want in a pre-arrest situation (the person has a pulse and/or is breathing), and whether or not they would want artificial nutrition if their medical illness prevented them from taking in adequate oral nutrition.
How a POLST form could help
A 67-year-old man is sent to the emergency room with chest pain and shortness of breath. He is also confused. The cardiologist says that a cardiac catheterization with angiogram and a stent are needed. The nurse tells the physician that there is a DNR order on his chart. Should the physician send the patient for an angiogram? It’s not clear.
If that patient had a POLST form that indicates DNR in case of full cardiac arrest but an order for full treatment in a pre-arrest emergency, the physician would immediately know what to do. The patient would be sent for the angiogram.
An 85-year-old man is admitted to the emergency room with severe pneumonia. He’s hypoxic, confused and refusing the ventilator. There is a DNR order on the charts. The physician feels that DNR doesn’t apply to this potentially reversible condition but the nurses disagree. He receives full resuscitation.
If that same patient had a POLST form indicating no CPR in the case of arrest and a preference for comfort care, the physician and nurses would have clear instructions. He would not have undergone full resuscitation, but would have been maintained in comfort with noninvasive maneuvers. .
A 59-year-old woman who is being treated for breast cancer is admitted to the emergency room for sepsis. She is transferred to intensive care and receives oxygen and maximum vasopressors. She has a DNR order on the charts. The staff are concerned that they are violating her wishes.
If she had a POLST form indicating no CPR in the case of arrest but limited interventions in addition to comfort measures, the staff may feel more comfortable treating her as they are doing and spend less time deliberating.
Armond and Dorothy Rudolph, Courtesy Compassion & Choices
The choice to stop eating and drinking is a legal and ethical option to hasten death, says end of life counselor Judith Schwarz of Compassion and Choices, an organization that provides support to terminally ill patients. Schwarz discussed voluntary stopping of eating and drinking, or V.S.E.D., with Terry Gross on NPR’s weekday magazine, Fresh Air.
Compassion and Choices counselors can advise willing patients about informed decisions that may hasten death. “Many people have implanted cardiac devices and defibrillators,” as Schwarz explains. “Those need to be turned off if you want to get your death to happen naturally or in a more hastened fashion.” Some people also opt to stop taking medications.
Her organization facilitates talks with patients and families about the decision to stop eating and drinking. “It’s a process, it needs to be well understood. There needs to be support,” says Schwarz. “There are lots of things in place for it to be ‘successful.’ And by successful, I mean a peaceful death that happens within days or two weeks.”
Patients die of dehydration, not of starvation, she explains. This point is often misunderstood. Schwarz maintains that patients don’t even feel hunger, but they become drowsy from lack of hydration. As dehydration progresses, patients become sleepier. They then slip into a coma before death.
“It is often the case that people, as they get close to the end of life, just lose interest in their surroundings, in their loved ones and in food and fluid,” Schwarz says. “People have been dying this way for generations, for thousands of years.”
She acknowledges that forgoing water can be difficult, for both the patient and for his or her loved ones. “Some people have a really tough time with a dry mouth,” she says. “You need to have lots of supporting and skillful caregiving and oral care.”
V.S.E.D. is legal in every state for the terminally ill. “That a competent person can refuse any medical intervention, including tube feeding, has been recognized by the Supreme Court,” says Charles Sabatino in The New York Times. Sabatino directs the American Bar Association Commission on Law and Aging.
Voluntarily stopping eating and drinking remains controversial
However, Armond and Dorothy Rudolph, married for 69 years, were evicted last year from their assisted living facility in Albuquerque, N.M. for choosing to stop eating and drinking.
Mr. Rudolph, 92, suffered severe pain from spinal stenosis and had a permanent catheter. Mrs. Rudolph, 90, was immobile. Both suffered from the onset of dementia, and they consulted with Compassion and Choices about V.S.E.D.
Officials at their facility, the Village at Alameda, called 911 after learning of the couple’s plans to report attempted suicide.
Mrs. Rudolph later described her condition to The Albuquerque Journal. “Life is miserable,” Dorothy Rudolph said, when asked why she wants to die. “Our bodies are pretty rotten by now. You name it, I’ve had it.”
Squad vehicles and emergency personal arrived at the facility, with University of New Mexico’s emergency medicine department’s Dr. Drew Harrell.
“They were able to very appropriately and eloquently explain their wishes and what they wanted to have done,” Harrell said. “They didn’t feel the need to go to a hospital. They detailed that they wanted control over their own end of life issues.”
The couple’s son, Neil Rudolph, later spoke with ABC News. “Nearly 1 million Americans live in these facilities, yet most don’t know how their end of life rights could be infringed upon as my parents’ were,” he said. “Their eviction shocked me. I think it’s inhuman for mentally competent adults to be overruled at the end of their lives by an assisted living facility administrator, or by anyone else.”
The couple eventually moved to a private home, where Mr. Rudolph’s ten-day fast resulted in death. His wife died the next day, surrounded by family.
The facility released this statement: “Assisted living facilities are equipped to provide assistance with activities of daily living such as eating, dressing and bathing.
“If we can see that someone in our care requires alternate placement, medical attention or a level of care beyond the facility’s capabilities, we have an obligation to notify a medical provider.”
ABC News interviewedMarshall Kapp, director of the Florida State University Center for Innovative Collaboration in Medicine and Law, about the Rudolph ordeal.
“Legal apprehensions probably played a big part in their decision, along with the fear of bad publicity,” Kapp said about the Village at Alameda. “A facility retains the right to evict somebody if they can’t care for them properly most of the time, so you’d have to look at the contract they signed.”
Sabatino says that those who oppose the act for religious or ethical reasons (or for fear of lawsuits) can throw up roadblocks. “While the theory may be clean, the execution may get messy.”
According to a 2003 study on V.S.E.D. by the New England Journal of Medicine, most V.S.E.D. deaths are “good” deaths. Oregon hospice nurses explain, “Unbearable physical suffering did not appear to be an important reason for this choice. According to the nurses’ reports, most deaths from voluntary refusal of food and fluids were peaceful, with little suffering, although 8 percent of patients were thought to have had a relatively poor quality of death.”
In light of the healthcare debate, Pew Research decided to analyze a 2005 survey of Americans on end of life decisions pertaining to medical treatment and life support. The majority of Americans (84%) support laws protecting the right of the individual to decide if he/she wishes to be kept alive through medical treatments. It should be noted that only 53% of people surveyed said they would choose to end treatment if gravely ill.
Surprisingly, very few Americans do the one thing that may help their end of life decisions be carried out. Only 29% of those surveyed have a living will. It is more likely that older individuals (particularly women) with children tell their children their wishes.
Pew’s analysis of the research is available at pew.org.
