National Health Care Decisions: A Week Of Dying In America
Posted on Friday, April 18th, 2014 at 11:13 am by lifemediamatters
This week is host to National Healthcare Decisions Day. The goal of the event is to “inspire, educate, and empower the public and providers about the importance of advance care planning.” Events are being held nation-wide to encourage the completion of advance directive forms as well as conversations with friends and family members about end of life health care wishes.
The latest study shows that 26% of people have completed advance directives. For those over age 65, the completion rate is 51%. Completion rates are higher among whites than other racial/ethnic groups, higher in those with more education than those with less, higher for those with higher incomes, and higher among widows than those of any other marital status.
There has been a push in the last 40 years to create newer and better documents, and to increase completion. I helped create two online websites to do just this. Completion will lead to lower costs in medical care, easier decision-making for family members, and an increased likelihood that one’s wishes will be followed.
The March 2014 issue of Anesthesiology News reported on a study presented at the Society of Critical Care Medicine meeting. Kelli Jackson, a nurse in Santa Barbara, learned that patients’ end of life wishes are often ignored. Jackson’s study looked at a teaching hospital in California where known end of life wishes were not followed in 60% of cases (n=35). Many studies show no change on patient outcome, no change on patient wishes being followed, and no change on reducing costs. Other studies show that there are changes in these areas.
Jackson cited several barriers to having wishes followed; they include lack of time to discuss before action was required and the lack of accessibility to documents outlining patient’s desires.
In the last few years, more emphasis has been placed on having conversations than completing documents. If opportunities are increased for people to speak to one another about these issues- the results could be lower costs, easier family decision-making, and an increased likelihood that one’s wishes will be followed. The most commonly cited system is Gunderson Health Systems “Respecting Choices” program; in its home city of La Crosse, Wisconsin, 97% of adults have advance care plans.
La Crosse is a city of 52,000 people with a median age of 29.2 years. Almost everyone speaks English at home. The percent of residents living in poverty is 23.1%. The population is 89.4% white, 4.2% Asian, 2.3% Black, and 1.9% Hispanic. Nine out of ten residents have a high school degree, and 26.5% have a bachelor’s degree. More than half have never been married, and 4.1% of residents were born outside of the United States. There are two hospitals.
Contrast this with my home of Chicago, with a population of 2.7 million and a median age of 32.9. Around 65% of people speak English at home. About a quarter of all residents live in poverty. The population is 31.9% white, 5.2% Asian, 31.9% Black, and 29.2% Hispanic. Eight in ten people have a high school degree, and a third have a bachelor’s degree. There are approximately 42 hospitals within city limits.
Many Chicagoans have been asking whether the model of La Crosse—being based in a fairly homogenous population—could be transported to a very large, very diverse city. It’s easier to keep track and have files of patient advance care wishes when there are only one or two hospitals.
This week also happens to be the celebrations of two major religions—Easter and Passover. Both of these are focused on death and dying. Good Friday recognizes the day that Jesus was crucified. While Passover is a festival about freedom from slavery, that freedom was only achieved by many plagues- including slaying of children and drowning of Egyptians. My Passover Seder this year was attended by a group that included three physicians (two of whom work in end of life care), two bioethicists (who work in end of life issues), a health journalist, two family members (who have been dealing with their mother’s senior needs), and a college student. We talked about all of the death that was mentioned in the Haggadah (a text that tells the story of Passover and the Seder); a conversation ensued about death with dignity, having decisions honored, and advance care planning.
The goal is not only to encourage others to think about and discuss their own end of life, but also to change a culture that still eschews the subject even 45 years after Elisabeth Kübler-Ross published On Death & Dying. As I say to my students, “The documents are important, but the conversation is critical.”
This message hit home quite personally in the last couple of weeks. A friend was involved in a motor vehicle accident that resulted in her body being maintained on a ventilator. She did not have an advance directive, but being my friend- she had been pulled into conversations about death, dying, and advance care planning on more than one occasion. She also spoke to her husband about her wishes. I recall her telling me that he did not really want to talk about it, so it was more of a one-way exchange. However, when the time came to consider turning off the ventilator, her husband did not hesitate. He knew exactly what she wanted, even if nothing had been written down. He waited a few days for her family to arrive from out of state to say goodbye. Her memorial service was held this week.
The truth is that as a society, we still do not know how to deal with dying or how to honor others’ wishes- or even whether we should honor them. In the last six months, we have seen the high-profile tragedies of Jahi McMath and Marlise Munoz. That these cases haunt us shows that no matter how many conversations we have, no matter how many documents we complete, the culture that does not engage dying needs to change. Health Care Decisions Day is one step toward that goal.
Stopping Eating And Drinking To Hasten Death
Posted on Thursday, April 17th, 2014 at 8:05 am by lifemediamatters
Seriously ill patients near the end of life who stop eating and drinking make an ethical and legal decision to hasten death, says Craig Klugman, chair of the department of health sciences at DePaul University in Chicago.
Voluntarily stopping eating and drinking (VSED) is legal in every state for the terminally ill. According to Klugman, seriously ill adults of sound mind should have the freedom to make decisions about their care at the end of life.
“While assisted suicide is only legal in a small number of states, rational suicide is legal everywhere,” Klugman told Life Matters Media. “This is not the same as removing artificial nutrition or a hydration feeding tube; a person stops ingesting food and liquid by mouth.”
Klugman said the process is fairly painless, and after a couple days the patient will cease to feel hunger pains and become drowsy. “We know this from studies of individuals on hunger strikes,” he added. “Choosing not to eat or drink does not mean a person rejects comfort care such as pain control, chewing on ice chips, and moisturizing the lips, skin and other tissues that can be uncomfortable as they dry out.” Patients die of dehydration, not starvation.
Loretta Downs, past president of the Chicago End-of-Life Care Coalition and founder of Chrysalis End-of-Life Inspirations, maintains that stopping eating and drinking is a natural behavior. “Every living thing stops taking in nutrition near the end– animals, plants, people. A person who is dying will often lose their appetite,” she said. “It is an important behavior because the patient still has control.”
Downs urges families of dying patients to remember that better care is often less care. “Loved ones often provide comfort food and drink during life, but at the end patients may become nauseous from the smell of food,” she said.
According to a 2003 study published in the New England Journal of Medicine, researchers determined VSED often results in “good” deaths. According to the survey of more than 300 Oregon hospice nurses, most deaths from voluntary refusal of food and fluids were peaceful, with little suffering. Only 8 percent of patients were thought to have had a poor quality of death. One in eight patients whose outcome was known resumed eating and drinking, most often because of thirst or pressure from family members.
Counselors with Colorado-based Compassion & Choices, an advocacy group working to enhance patient rights at the end of life, facilitate discussions about VSED with willing patients across the country.
“The patient needs to be clear about what he or she wants, and let the family know. The process can be peaceful and comfortable, especially if hospice is on board,” said Dr. Judy Neall, medical director of Compassion & Choices’ end of life consultation program. Neall said about 20 percent of patients Compassion & Choices counsels each year about hastening death are VSED patients.
“What can make patients feel uncomfortable during the process is if family or friends provide some food or water, because then the body doesn’t know what to do,” Neall offered.
The simplicity of VSED helps discourage patients from attempting illegal, and more dangerous, efforts that quicken death, Klugman added. “When chosen with a support system in place, VSED can be a responsible, rational, compassionate, and painless way to take control of one’s end of life that does not involve extreme measures, like guns or poisons, or run the risk of implicating someone else in an illegal activity.”
National Event Urges Americans To Plan For The End
Posted on Wednesday, April 16th, 2014 at 8:14 am by lifemediamatters
By Life Matters Media President and Co-Founder Randi Belisomo for Reuters Health
With taxes filed, Americans today are being asked to consider life’s other certainty: death, and the myriad complications that often now accompany it.
National Health Care Decisions Day, marked on this date for the seventh year, is one in which patients and health providers are encouraged to think about their own end-of-life preferences. The man behind it, health care attorney Nathan Kottkamp, says such considerations have never been more critical.
“It’s a broken record issue,” said Kottkamp, a member of multiple hospital ethics committees. “Ninety percent of ethics consults I have been involved in deal with end-of-life decisions without advance directives.”
Filming “Prison Terminal” Was “Soul Sucking”
Posted on Sunday, April 13th, 2014 at 8:06 am by lifemediamatters
Filmmaker Edgar Barens spent a grueling six months in-and-out of the Iowa State Penitentiary– one of the nation’s oldest maximum security prisons– gathering footage for his latest film, Prison Terminal: The Last Days of Private Jack Hall. In 2006, Barens, a hospice volunteer, was granted unprecedented access to the facility’s new hospice program.
The Oscar-nominated short centers on the final months of terminally ill prisoner George William “Jack” Hall and the prisoners-turned-hospice volunteers who care for him. Hall, an 82-year-old World War II veteran, was sentenced to life in prison for a 1977 murder. Hall killed a man he said he believed was selling drugs to his teenage son.
Barens, a visiting researcher with the University of Illinois at Chicago’s Jane Addams Center for Social Policy and Research, spoke to Life Matters Media about his experiences working in the prison.
Should prisoners near the end of life have more freedom?
Barens: The truth is, and I’m quoting the director of the prison hospice, the gavel already dropped for these guys; the judge made a decision, they are guilty, they are in prison– that’s it. They lost their freedom, and they shouldn’t be punished any further. The freedom to die with dignity is a human right.
Trust me, it’s not fun living in prison. I could barely do it for six months, let alone for 20 years. However, I have not had a violent act perpetrated against my family, and I can understand how some people will feel differently. But as a society, I think we should strive to be better.
At the end of the day, a prison is soul sucking. There are so many prisoners who don’t know what they’re worth, so many lives wasted in cells. Not all prisoners are like the ones you see on Lockup: Raw.
Were some prisoners skeptical of hospice care?
Barens: Many terminally ill prisoners don’t want to touch hospice, because they think it’s another way for the state to force them to die, instead of doing treatments. There are inmates who will just do chemo until the very last minute. They don’t trust the state to say “you’re terminal.”
Prison hospice programs have started to lift the veil of mystery surrounding the infirmaries, because they incorporate inmates into the programs. The wall of suspicion is breaking down, and the prisoners who work with the nurses don’t see bad things going on, the rumors they’ve heard.
Instead, they see the slow decline of someone’s health. Prisoners age an average of seven years faster, because of the stresses of being in prison; a 50-year-old is considered elderly. During the next decade, some 100,000 inmates will die.
Describe your relationship with Jack Hall?
Barens: Well, the first two months I was in the prison there was nobody in hospice. Jack was a long-term infirmary patient– he was in there for 12 years, and it was by happenstance that he became the next hospice patient.
I got to know Jack when he was in the infirmary, and he would always go back to his World War II stories– he went to war when he was 17 and came back when he was 20. I think those were very formative years for him.
I realized he was damaged by the war, and he killed probably hundreds of enemy soldiers with the knife– he was a ranger, he was trained to kill. When he got back home, the government only gave him some Lucky Strikes and money, and said “forget everything you did.” So, I think Jack’s story reaches back to the war.
Many people who see the film are sympathetic towards Jack– he killed a drug dealer who allegedly got his son hooked on drugs. But I’m not justifying what he did, there’s no justification for that.
My first death as a hospice volunteer was Jack.
How did you react to being nominated for best documentary short?
Barens: It was crazy, I never in my wildest dreams thought it would go this far. I went, and it was fantastic. I took my mom, and we walked the red carpet together.
I think this issue will get a lot more attention now. I shot over 300 hours of footage, and I plan on releasing some of it online.
“Prison Terminal” is available on demand for HBO subscribers
Illinois Prepares For New POLST Form
Posted on Friday, April 11th, 2014 at 8:36 am by lifemediamatters
Seriously ill patients in Illinois may benefit from the new Physician Orders for Life Sustaining Treatment (POLST) form, a medical order designed to travel with patients across care settings and direct doctors to provide or withhold lifesaving treatments.
“POLST has swept the nation, and Chicago is right in the middle of it,” said Dr. Julie Goldstein, a clinical ethicist and chair of the POLST Illinois Taskforce. “If done correctly, the POLST model will improve conversations about end of life and ethical care.” Goldstein addressed dozens of medical providers and caregivers Wednesday during a POLST webinar in support of National Health Care Decisions Day.
In 2013, Illinois modified the Department of Public Health Uniform DNR Advance Directive to closer resemble the National POLST Paradigm standard. POLSTs are more detailed than conventional living wills and advance directives– these forms give patients the freedom to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes, among other things.
For instance, a terminally ill cancer patient may choose to decline resuscitation efforts, but opt for artificial nutrition. An elderly patient suffering severe dementia may opt for comfort care only.
The form is intended only for individuals in their last year of life, a point Goldstein stressed. “POLST is not for everyone. We recommend physicians ask themselves the “surprise” question: Would you be surprised if your patient died within one year?”
Ideally, patients will discuss their end of life wishes with friends and family before filling it out. “It is a process, not a single conversation,” Goldstein added during the informational call. “It allows the patient more time to think about future scenarios and discuss them with family, friends and care providers.” The Illinois POLST is divided into basic sections– CPR; medical interventions; artificial nutrition– and must be signed by a physician.
Physicians, nurses and emergency responders must also follow patients’ preferences when indicated on completed forms.
According to the Illinois Health Care Surrogate Act: “A health care professional or health care provider, or an employee of a health care professional or health care provider, who in good faith complies with a do-not-resuscitate order made in accordance with this Act … may not be found to have committed an act of unprofessional conduct.”
POLST was first developed in Oregon in the 1990s, and now 14 states have officially endorsed programs; 28 states are considering the use of these forms.
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