It’s The Ventilator’s Fault
Posted on Saturday, January 11th, 2014 at 9:41 am by lifemediamatters
If you were from a foreign nation looking at the United States news, you might think that this was a nation that has declared war on death. Or perhaps, this country has denied death entirely.
In California, teenaged Jahi McMath,who has been medically and legally dead for nearly a month (death certificate was issued December 12), has been moved to an unnamed facility and given surgical procedures to introduce air, water and food more easily. Meanwhile, her body continues to degrade and decay.
In Texas, Marlise Munoz, a woman who may be brain dead or may be in a persistent vegetative state, is being maintained due to the hospital’s interpretation of a state law. This way, Munoz may be used as an incubator to keep her 14-week old fetus growing- despite the wishes of her family that she be disconnected from her ventilator.
In California, a mother is facing criticism for exercising her autonomy beyond reason to define death in her own terms. In Texas, a family’s autonomy to make surrogate health care decisions is being denied. Both McMath and Munoz have become objects and tools of various groups.
In California, McMath is now an object of unrealistic hope and political factions. In Texas, Munoz is being made into an object and tool to gestate a fetus that may never be born and may not be viable after oxygen deprivation. Not only has her family expressed their wishes, but Munoz herself had deliberate conversations with loved ones about not wanting to be maintained with the use of artificial support. Lest we forget, the human incubator is now also being used as a political tool for elected officials in attempts to further careers and standing with certain political, religious and social factions.
Ethicists, politicians, physicians and attorneys have taken strong stands and shared opinions on these two cases. There are questions about family decision making autonomy, surrogate decision making, the limits of law, the protection of the unborn, the respect for personal beliefs, the financing the maintenance of the bodies, a state’s interest in unborn life, the poor state of science education, the lack of public education on death and if these situations are some odd confluence of events or precedent-setting.
Some blame McMath’s mother for refusing to accept the reality of her daughter’s death. Others blame a right-leaning state government. There are some placing blame upon a hospital for refusing to acquiesce to a grieving family’s wishes. Still others blame a family that will not give a fetus every chance at being born.
However, I take a different approach as to whom or what is at fault. I blame the ventilator.
If ventilators did not exist, then McMath’s heart would have stopped a month ago, and her mother would have been forced to face her daughter’s death. Without a ventilator, there would be no way to use Munoz as an incubator.
As technologies are created, there is often debate about how we should put them to use. But history has shown that new technologies are usually adopted and used in ways no one could conceive. I suggest it is time we rethink the vent.
Ventilation machines date to the 1800s as negative pressure devices. In 1928, the Drinker respirator was introduced. More refinements came in 1931. These early machines were widely used for polio patients. In 1949, J. H. Emerson designed a vent to be used in anesthesia and in intensive care, predominantly for polio patients and those undergoing surgery. In 1971, a more powerful, smaller and more effective ventilator was introduced. The vent could be used on a wider variety of patients and for longer periods of time.
Sometimes, the ventilator is used to preserve organs for transplant. Since the 1970s, it has been used to keep alive those individuals who lack consciousness—those in a coma or persistent vegetative state.
Apparently in 2014, ventilators are now used to keep the dead functioning as incubators and as vessels of misguided hope. From its early use as a tool to keep those with functioning brains alive, the vent exists now for the purpose of perfusing air into dead bodies.
My suggestion is that we limit the use of the vent, since its use seems to be the problem in these cases. Vents should only be used on those individuals whom can consent. If a patient has consented to organ donation, then that patient has given advance consent to the use of a ventilator. If a patient has a disease that destroys the ability to breathe, that patient can consent. But if a someone starts to bleed and suffers a heart attack that deprives the brain of oxygen to the point of death, that patient cannot consent.
In every other medical aspect, patient consent is required before a doctor so much as touches him or her (with exceptions for emergencies). Why is the opposite true in the case of the ventilator? “Vent now, ask questions later” has become a medical rule.
For example, if one’s kidneys are failing, we do not wait for that person to become unconscious to reflexively put them onto dialysis- requiring consent to remove the treatment or look for documentation stating that this support should removed. In most cases, a person must consent to dialysis before its initiation. This is, of course, an imperfect comparison- waiting ten or 30 minutes to begin dialysis would most likely not be fatal- and waiting that amount of time to ventilate someone not breathing certainly would be.
In present circumstances, if a patient does not want a vent, then an advance directive is required. Why should we accept that we must consent to not being treated, when in most other areas of medicine- the reverse is true?
We should adopt a notion of presumed refusal of ventilators. If a person wants one, then he or she must provide advance consent. Rather than being a first reaction, the vent should only be used when medically appropriate and requested by a patient (or the patient’s legal surrogate or advance directive).
There is likely to be resistance to such a change, as the ventilator is a long accepted part of medicine and has been popularized in the media. It seems that no medical drama would be complete without a ventilated patient. This notion may not have prevented McMath’s mother from consenting to her child’s dead body being kept warm; but moving in this direction would change our expectations that miracle machines- ones that bring people “back from death”- are the norm. Therefore, they should not be expected.
I blame the frequent, automatic use of ventilators for many of these issues and unrealistic expectations. If we change the law, the standard of care and the media’s treatment of these circumstances, then perhaps the tragedies that these two cases represent can be avoided.
The Accidental Caregiver: An Interview With Gregor Collins
Posted on Monday, December 2nd, 2013 at 8:49 am by lifemediamatters
When Gregor Collins began caring for noted Austrian Holocaust refugee Maria Altmann nearly five years ago, he did not expect his experiences to evolve into the most profound and intimate relationship of his life. The aspiring actor/producer also did not foresee a critically acclaimed memoir detailing their unique bond, or his involvement in A Good Day To Die- an upcoming feature film exploring end of life issues with a comedic perspective.
Now 37, Collins spoke to Life Matters Media about his relationship with Altmann and his caregiving experiences. His first book, ‘The Accidental Caregiver,” was published in 2012. Altmann died in 2011 at age 94 with complications associated with dementia. She is remembered for her successful legal campaign against the Government of Austria to reclaim five family-owned paintings by the artist Gustav Klimt; the paintings were stolen by the Nazis during World War II.
How did you become a caregiver for Maria Altmann?
I was never drawn to it. Actually, it was never something I considered doing. I was just living this selfish life in Los Angeles and pursuing acting pretty heavily. A good friend of mine called me and said, ‘I’m taking care of this woman from Austria and she’s awesome, you have to meet her.’ I sort of blew him off a bunch of times, but then he told me that the family really wanted another caregiver. I finally agreed to meet her, and my life changed right there. It was like the first time in my life I cared for somebody besides myself, really.
I was definitely not a perfect caregiver. I didn’t have any skills or know anything about medicine. All I had was a good heart, and she was unbelievably amazing. She brought the best out of me. I was hired as a caregiver, but I became her companion- someone she wanted to have around to talk and laugh with. I wanted to be there every day. She was like a mother, a grandmother, a friend, even a lover from another lifetime.
Los Angeles is a lonely place, so it was nice to talk with her about art, the weather– she satisfied me in a romantic way, like we wished we could have met 70 years ago. We just clicked, you know.
What was the most difficult part of caring for someone?
Because I really fell in love with her, it was difficult to see the aging. It is really difficult to see someone you love and know that they won’t be around. That’s the hardest part.
Whenever I got emotional around her, I would leave the room. There were many occasions she would say something so sweet to me. One time we were driving and she said to me, ‘You’re going to miss me. I’m going to miss you.’ I started crying out the window, and she never knew. Towards the end, I cried in front of her for the first time, and I felt guilty- like she would know she is going to leave soon. But she almost giggled at me because she thought it was so cute.
How did you interact with Maria when she was feeling ill?
She developed some dementia towards the end. When I met her a few days shy of her 92nd birthday, she was right on the ball. After the Klimt case, her oldest son tells me that she was sharp as a tack until 90. She would talk to reporters in Italian and French and German, and would really get the media laughing and on their toes. After the paintings came in, she felt like she could wipe her hands and just be an older woman. It was never close to the point where she couldn’t recognize me, but I could leave the room and come back- and she would think I was coming back for the first time.
Often times with Maria, I saw firsthand how exposure to love and youth were more powerful than medicine. Instances where she was in pain or not her usual effervescent self, I would play her an opera, or I would walk in the room with a smile. These little things brought more life and joy and love to her face and body. The notion of ‘love is more powerful than medicine,’ I stand by it.
Also, I read that when it comes to Alzheimer’s and dementia, all the top doctors and medical professionals agree that medicine is not the most powerful or effective means to fight them– keeping minds active and stimulated is. I felt that was part of my job to keep her mind scintillated, and I really believe this extended her life and kept her dementia at bay as long as humanly possible.
Why did you choose to write ‘The Accidental Caregiver’?
I kind of wrote it because I felt like it was one of the most important things I could do in my life. I needed to preserve her legacy and our relationship. I also wrote it because I was so emotional, and it was an intensity. It was just me alone in a room at night crying or laughing about the day. It was really touching and surprising when people started to connect with it. I never expected the response.
Spirituality At End Of Life
Posted on Friday, December 28th, 2012 at 5:07 pm by Life Matters Media
Physicians and nurses at Boston medical centers cited a lack of training as the main reason why they rarely provided spiritual care for their terminally ill cancer patients, even though most patients considered it important to their end of life care.
A new study published in the Journal of Clinical Oncology reports that out of the 204 physicians from four medical centers who participated in the three year study, just 24 percent reported providing spiritual care. Among the 118 nurses, only 31 percent reported providing care.
“I was quite surprised that it was really just lack of training that dominated the reasons why,” senior author Dr. Tracy Balboni, an oncologist at the Dana-Farber Cancer Institute in Boston and researcher of spirituality, told Reuters Health.
Spiritual care may range from prayer with a physician or nurse to recommendations for a hospital chaplain.
Spiritual care “is considered by patients to be an important aspect of end of life care and is also associated with key patient outcomes, including patient quality of life, satisfaction with hospital care, increased hospice use, decreased aggressive medical interventions, and medical costs,” Balboni said.
Even though current palliative care guidelines encourage medical practitioners to mind religious and spiritual needs that arise during a patient’s end of life care, most medical practitioners remain silent. Ninety-four percent of patients with advanced cancer had never received any form of spiritual care from physicians.
Spiritual care may become more common in the future, however. “There was a time when nurses and physicians may have said, ‘That’s not my job,’ but I think the tides are changing,” said palliative care researcher Betty Ferrell of City of Hope, a cancer research center in Duarte, California.
“I think we are realizing we can no longer ignore this aspect of care,” Ferrell told Reuters. She’s a professor of nursing who was not involved in the new study.
Study researchers suggest more spiritual care training for physicians and nurses. The study found only 13 percent of doctors and nurses reported having such training. However, those who received training were almost 11 times more likely to provide spiritual care to their patients than those who had not.
Occupational Stress: Doctors Suffer When Unable To Save Lives
Posted on Thursday, November 29th, 2012 at 1:03 pm by Life Matters Media
Physicians who treat the terminally ill may suffer from emotional stress when unable to save patients’ lives. Burnout and compassion fatigue are two serious forms of occupational stress physicians may suffer, according to research by Michael Kearney, M.D.
Kearney, a palliative care physician at Santa Barbara Cottage Hospital in California, describes burnout as “the end stage of stresses between the individual and the work environment.” Compassion fatigue is “secondary post-traumatic stress disorder, or vicarious traumatization — trauma suffered when someone close to you is suffering.”
Health care journalist Jane Brody addresses the stress and anxiety oncologists struggle with in a new article for The New York Times. Brody writes, “A doctor with compassion fatigue may avoid thoughts and feelings associated with a patient’s misery, become irritable and easily angered, and face physical and emotional distress when reminded of work with the dying.” Compassion fatigue may lead to burnout.
Up to 60 percent of practicing physicians report symptoms of burnout.
According to Brody: “Patients and families may not realize it, but doctors who care for people with incurable illness, and especially the terminally ill, often suffer with their patients. Unable to cope with their own feelings of frustration, failure and helplessness, doctors may react with anger, abruptness and avoidance.”
Physician suicide linked to occupational stress
According to Crystal Phend, senior staff writer for MedPage Today, “Suicide among physicians appears to follow a different profile than in the general population, with a greater role played by job stress and mental health problems.”
Phend cites a study by Katherine J. Gold, M.D., of the University of Michigan in Ann Arbor, who found that problems with work were three times more likely to have contributed to a physician’s suicide than a nonphysician’s. Mental illness was also 34 percent more common before a suicide among physicians.
Up to 60 percent of practicing physicians report symptoms of burnout
“The results of this study paint a picture of the typical physician suicide victim that is substantially different from that of the nonphysician suicide victim in several important ways,” Gold wrote for General Hospital Psychiatry. “Inadequate treatment and increased problems related to job stress may be potentially modifiable risk factors to reduce suicidal death among physicians.”
Although physicians have more access to health care, they may be reluctant to seek help. “I think stigma about mental health is a huge part of the story. There is a belief that physicians should be able to avoid depression or just ‘get over it’ by themselves,” Gold wrote.
More than 200 of the 31,636 suicide victims reported in the National Violent Death Reporting System from 2003 to 2008 were physicians.
Meditation may help physicians
A 2008 study published by the Journal of Palliative Medicine, in which researchers studied 18 oncologists, found that physicians who viewed their work with patients as both biomedical and psychosocial found end of life more satisfying than those with a more biomedical perspective.
“Physicians, who viewed their physician role as encompassing both biomedical and psychosocial aspects of care, reported a clear method of communication about end of life care, and an ability to positively influence patient and family coping with and acceptance of the dying process,” the researchers concluded.
“In contrast, participants who described primarily a biomedical role reported a more distant relationship with the patient, a sense of failure at not being able to alter the course of the disease, and an absence of collegial support.”
Kearney recommends “mindfulness meditation,” a Buddhist-influenced practice for physicians suffering from stress. “The doctor is able to recognize he’s being stressed, and it prevents him from invoking the survival defense mechanisms of fight (‘Let’s do another course of chemotherapy’), flight (‘There’s nothing more I can do for you — I’ll go get the chaplain’) and freeze (the doctor goes blank and does nothing).” He claims that even 8-10 minutes a day of “mindfulness meditation” can help.
‘The Quality of Life’: End Of Life On stage
Posted on Tuesday, November 20th, 2012 at 5:34 pm by Life Matters Media
The Den Theatre’s adaptation of Jane Anderson’s play “The Quality of Life” addresses many complex and often unspoken concerns baby boomers face as they begin to consider the end of life. The play focuses on Dinah and Bill (Jennifer Joan Taylor, Stephen Spencer), a devout, evangelical and conservative married couple from Ohio. They visit their freethinking agnostic cousins, Jeannette and Neil, (Liz Zweifler, Ron Wells) after a forest fire destroys their California home.
Dinah and Bill recently lost a young-adult daughter, their only child, to an unspeakable crime, and their own relationship has been strained since. Neil is facing late-stage prostate cancer, and Jeannette is unable to imagine living her life without him.
Neil uses marijuana to dull his cancer pain, a practice Bill judges harshly. When Bill and Dinah learn of Neil’s plans to end his own life in the coming weeks, the couple’s visit to California is complicated even more.
The couples’ ideologies clash as they attempt to work through their different beliefs about religion, medical marijuana, assisted death, morality and mortality- all within feet of the audience. Audiences become so invested in the characters that tears flow, an experience the actors call cathartic.
Life Matters Media spoke with the cast about their experiences with the play.
Why is discussing the end of life taboo in America?
Spencer: I think it’s such a cultural thing. I have friends who are more like Neil and Jeannette who’ve had a death in their family. They read through the Tibetan Book of the Dead and chanted and their whole family was around. They made a beauty of death because they saw it as a passing. In America, death is taboo. A play like this opens up the discussion.
Wells: I think it has a lot to do with our Puritanical history, our religion. It seems to me that people elsewhere in the world, particularly in Europe, have a healthier view of life and death. A lot of it gets tied up in our beliefs and everyone wants to live. I think this play, at the heart of it all, is about “how do you say goodbye?”
Taylor: Because it hurts. We don’t like to talk about things that hurt us. I love being in a play that provokes. It’s been a dream come true to be part of a story that’s so important. I’ve met people who’ve lost their children and came to this play. But they left feeling relief, in a cathartic way.
Zweifler: I’ve been nervous about people coming to see it for that reason. But they seem to really like it.
How do you feel about laws such as Question 2, which was just voted down in Massachusetts? It would have allowed physicians to prescribe life-ending drugs to some willing terminally ill patients.
Zweifler: I’m open to it, but when someone gets to decide one’s fate, that’s worrisome. But I like the idea of when it’s your time, you get to decide. But the balancing act is when do you let people go? There are new medical technologies that can keep people alive.
Wells: I have no problems with the issue at all. But I understand how people could fear these types of laws.
Taylor: I was raised Catholic and was raised to believe that suicide is a sin, and that you go to hell if you do it. Some of that is stuck in me. I don’t like the idea of someone being able to end one’s life. I like the idea of comfort at the end of life. I would probably not vote for it, but you shouldn’t have to die in pain. Not when there are good drugs around.
Do you identify with your characters?
Taylor: I’m more like Dinah than I would have ever thought. I think of myself as this liberal person, but I have this little conservative side to myself. I never really thought of it until I played Dinah. I would say things that Dinah would say. I thought I was Jeannette.
Wells: Neil is the most personal role I’ve ever played. Neil is the man I want to be. I see a lot of myself in him.
Zweifler: I definitely have Jeannette characteristics but I’m not as hard on people as Jeannette is.
The Chicago Tribune’s Chris Jones recommends this adaption. “In a second-floor walk-up, you’ll find honest Chicago acting, deep thoughts, honest writing about societal change and compassion for the messiness of all our value systems, let alone the way we want to face our end,” he wrote in his three-star review.
The Chicago Theatre Review’s Rachel Parent has called the play “a strong note in a beautiful place.”
Tickets are available here
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