SECTION D: ETHICAL MUSINGS
(Note: This section is from The House Officer's Survival Guide: Rules, Laws, Lists and Other Medical Musings, by Lawrence Martin, M.D. It is written for doctors in training, but the material should be of interest to anyone interested in medical ethics and end-of-life issues. The stories "Call NASA!" and "We Can't Kill Your Mother!" in this section are from the book "We Can't Kill Your Mother!" and Other Stories of Intensive Care, the complete text of which also on-line.
DNR: A 5-STEP GUIDE TO HELPING PATIENTS AND FAMILIES
MAKE END-OF-LIFE DECISIONS
Approximately 2,200,000 people die each year in the US, 80% of them in acute or chronic care facilities. In the last three decades widespread availability of life-support machines and intensive care units have changed physicians' management of death and dying. In fact the field of "death and dying" has taken on a "life" of its own. We now have hospital policies (do-not-resuscitate), federal laws (Patient Self-Determination Act), and intense literature discussion of ethical and philosophical issues (e.g., medical futility, 'CPR-not-indicated' policies, assisted suicide, euthanasia, medical rationing). The Patient Self-Determination Act was passed by Congress in 1990, and its requirements became mandatory in November 1991 for hospitals that receive Medicare and Medicaid funding. These hospitals must provide all patients, at the time of admission, with information regarding their right to establish an "advance directive." Patients who choose to establish an advance directive are then provided proper forms on which they may state their intentions.
There are two broad types of advance directive: Durable Power of Attorney for Health Care and the Living Will.
With the Durable Power of Attorney for Health Care the patient appoints a surrogate as his/her agent for health care decisions, in case he/she becomes unable to communicate or make decisions.
With the Living Will, the patient provides advance written directions (via a standard legal document) about life support in the event he/she is in a "terminal condition" and unable to communicate, or ends up in a "permanently unconscious state." Unfortunately, the wording in the living will is subject to wide individual interpretation; moreover, studies to date indicate the Self-Determination Act has not been effective in increasing the number of advance directives.
While interesting to discuss, neither trendy issues nor laws nor advance directives have appreciably altered the process of making end-of-life-decisions. Such decisions still require that the physician approach the patient and the family in a humane, understanding and professional manner.
From a physician perspective, there are five steps to helping patients and families make end-of-life decisions.
1. Recognize when decisions must be made, and facilitate making them.
The wide availability of life support machines has made it imperative that physicians recognize when decisions must be made; the default mode in hospitals is usually to do everything if a patient arrests, or stops breathing. Is "everything" really wanted? If a terminally ill patient is admitted, for whom life support machines offer nothing more than a prolongation of dying, and a conscious decision is not made about their use, the default mode means they will be used. You must recognize when it is appropriate to raise the issue, and help your patient (or family, or both) to make an informed decision. Although there is both an ethical and legal basis for unilateral decision making in some situations (e.g., if CPR is considered medically futile, it does not have to be offered), in most hospitals and for most patients it is still 'automatic CPR' for everyone unless prohibited by a specific DNR order.
2. Clarify in your mind what you feel would be appropriate/inappropriate for the patient.
This is perhaps the most difficult step for physicians. Many doctors, particularly house officers, are even confused about whether they should have opinions or make judgements on the matter. Some feel they should stay "objective" and let the patient decide after being informed of the facts. However, the sicker the patient, or the closer the patient is to end-of-life, the less realistic is this "objective" stance.
In fact, all medical care is predicated on a strong
set of beliefs and attitudes by the care givers. Failure to appreciate and to
convey these values in a professional manner is the biggest stumbling block to
effective DNR decision-making. Suffice to say that the treating physician's
values are important to the people (patient, family) who are asked to
become involved in medical decision-making. More to the point, if you are vague
or ambivalent about what is appropriate for your patient, others will likely
not be able to make an informed or rational decision. This does not mean telling
families "what to do." It does mean having a clear understanding of the situation,
and some value judgement as to what is right and wrong in the situation so you can
guide the discussion and accept the outcome. You must clarify in your own
mind what is appropriate or inappropriate for the patient and then communicate your
assessment to the right people.
3. Communicate your understanding of the situation clearly and directly to the right people.
The patient is obviously the right person with whom to discuss DNR issues if feasible. However, in many situations the patient is too ill to make decisions, or is demented or otherwise incapacitated. "Family" is then called upon, but which family? Discussing DNR issues with a third cousin to the exclusion of an involved spouse or offspring obviously makes little sense. The closest relationship to the patient may be a non-relative friend, but again that is not helpful if there is family, no matter how distant. You need to identify the closest blood relative or relatives, and make sure they understand the situation as you assess it. Ordinarily this closest relative should be a spouse, an adult child, or a sibling, in that order. Recognize that the closest relative(s) may be in another city, or even difficult to locate.
4. Achieve agreement on any plan of action or inaction.
Even after you have identified the right people, there should be agreement on any
plan of action or inaction. You don't want to end up in an adversarial situation, where
some of the family wants to withhold machines and other family members wants them used.
It may require several meetings and discussions, but at least there should be some
agreement that the plan chosen is reasonable and acceptable to all involved. A corollary
of Step 4 is that the physician must be prepared to accept changes in the plan made by
the patient or family during the hospitalization. A confirmed DNR order one day may
change to a "do everything" request the next day. There are many reasons why the DNR
situation may alter for a given patient (changing family dynamics as various relatives
come and go; a change in physician coverage; a new consultant with a different approach
to the problem; a change in the patient's attitude, medical condition, etc.).
5. Document any discussions or conclusions.
It does no good to arrive at a plan, fully agreed to by family and patient,
and not have it set down clearly for all caregivers to follow. It is important
that the plan, even as it evolves, be documented in the chart, so there is no
mis-communication about what has taken place. This is more than medico-legal
common sense; it is good communication and a pre-requisite to good patient care.
* * *
The stories "Call NASA!" and "We can't kill your mother!", both in this section, amplify the process described above.
This story is from "
We Can't Kill Your Mother!" and Other Stories of Intensive Care
"You asked them WHAT?" My voice was raised in mock anger. I wanted to show the housestaff on morning rounds in the ICU that Dr. Howard Stine's question was unacceptable. Shortly after admitting an 88-year-old man with pneumonia the intern had posed a certain question to the patient's son and daughter.
"I asked them," Dr Stine repeated, 'Do you want us to do everything for your father?'"
"And what did they say?"
"They said yes."
"I see." I waited a few seconds for someone to offer comment. Dr. Stine was far from the first neophyte physician to ask such a silly question, and he surely wouldn't be the last. Instead of responding, everyone on rounds -- two interns, a senior resident, two nurses -- looked past me in the direction of the patient, Jack Smilovsky. We were standing outside his room and sliding glass doors made him easily visible from the hallway.
I knew what the housestaff were thinking. `Well, it's probably not a good idea for Mr. Smilovsky to receive too much heroics, but if that's what his family wants, what are you going to do?'
"Barbara, what do you think of Howard's question?" Barbara Milo, the resident on the case, had rounded with me many times and knew my feeling about this recurring problem. Barbara is quick-witted and able to display the right amount of sarcasm when appropriate. Turning to Howard, with her head cocked slightly toward the patient, she went right to it.
"Do they want him dialyzed if his kidneys fail? Do we intubate him if his brain slips between his vertebrae? Do we send him for a heart transplant if he doesn't respond to drugs? Do we give platelet transfusions if his bone marrow goes zippo? Do we..."
"OK, Barbara, thank you." I looked toward Howard but spoke to everyone. "WE don't know everything that can be done. How can you ask a patent's family if THEY want everything done? Medical technology is endless, infinite!
"Soon we'll be sending patients into space, for god sakes, to treat them with zero gravity! Do the Smilovskys want us to send their father into space? Did you ask them if we should call NASA?" Everyone laughed. At least I had their attention. Dr. Stine was buried by the laughter but he managed to speak up.
"Dr. Martin, what should I have asked his family?"
"Not a zero option question. With what you asked, either they could say yes as they did or 'no, don't do everything.' But saying no puts them on an instant guilt trip. Maybe their understanding of 'don't do everything' is that we'd let him die for want of an aspirin or a bedpan. Who knows? You didn't give them any realistic options. It was like you came out and said: 'OK, we've got your father: does he live or die?' What could they say?
"Now that they've said yes, you've left Mr. Smilovsky open for mega technology. Maybe not the space shuttle yet but just about everything else. Look at him."
I slid open the doors and we went in and surrounded his bed. It was a pathetic scene. Mr. Smilovsky looked his age plus another ten years: gaunt, wasted, emaciated, out of touch with what was happening. His eyes were half closed and sunken into their orbits. His open mouth showed only toothless gums and a tongue that moved ceaselessly back and forth, without purpose. He might be suffering, but nothing in his eyes or hands or mouth communicated any feeling. This was not a human being so much as a heart and pair of lungs inside an ancient body. Mr. Smilovsky deserved antibiotics, a warm bed, and kindness. He did not deserve because he would not benefit by artificial life support.
At the start of rounds we learned that Mr. Smilovsky had been in Mt. Zion Nursing home for four years, the last two completely bedridden and demented from longstanding Alzheimer's disease. When he developed fever and shortness of breath he was sent to our hospital's emergency room. Lacking any clear directive about use of heroics the ER doctors sent him directly to the ICU, where questions about how far to go were (apparently) first asked.
Now, at the seeming behest of his children, neither of whom, to be sure, had demanded anything in particular, we were obligated to do anything and everything to keep him alive. The medical diagnoses were pneumonia, sepsis, and dementia. Treatment was with antibiotics, fluids, and nasogastric feeding.
Mr. Smilovsky's condition was tenuous. Any hour he might 'need' an artificial ventilator for respiratory failure. An hour after that he might 'need' infusion of dopamine to support his blood pressure. Then he might 'need' a pacemaker, kidney dialysis, and a host of other readily available medical technologies.
For the moment however, his care looked reasonable; he had not yet entered the realm of high tech. I was ready to move on but the other intern on rounds, Pier Simpson, asked: "Aren't we obligated to do what's necessary? I mean, isn't that why he's here?"
Blessed be the intern who bids me to continue. Professional life would be lonely without someone to TEACH.
"Pier, how many people die each year in this country?"
The intern shrugged.
"Well, how many people are in this country. You need to know that piece of trivia first." After a few seconds of silence from Pier I said, "Anybody?"
"About two hundred and fifty million," said Molly, one of the nurses."
"Right. Now how many people die each year, of all causes?"
"About a million?"
"No, actually it's about two million. Now, excluding those who die before they can get to a hospital, and children, and accident victims, let's say that about one million mostly elderly people die of chronic disease or end-stage illness or old age. Furthermore, lets say they all end up in hospitals like ours, and that they all get connected to life support machines just as they are about to die."
"Dr. Martin," Molly interrupted. "Shouldn't we discuss this outside his room?" Actually, it didn't matter to Mr. Smilovsky, I was sure of that. But our proximity to the patient bothered Molly so I agreed to continue outside. We walked out and closed the sliding doors behind us.
"For the sake of argument, lets say that life support therapy prolongs each patient's dying by an average of two weeks. They will all die soon anyway, because that's the premise, but we're going to interfere with nature a little by instituting artificial ventilation, pressors, and any other life support deemed medically necessary. Furthermore, this is all going to be done in intensive care units like ours. How much are we talking about?"
As soon as conversation on rounds turns to economics everyone perks up and listens. It never fails. I now had their undiluted attention.
"It depends on what each hospital bill is," said one of the interns.
"Right. Let's say two weeks of therapy before each patient surrenders to nature that seems about the average length of time ventilators can keep them going. Remember, they are destined to die anyway. Now the basic room rate is about a thousand a day. Added to that are charges for antibiotics, respiratory care services, x-rays tons of x-rays and other odds and ends, roughly twelve hundred a day above the basic room rate. Twenty-two hundred a day is the average hospital charge for an ICU ventilator patient. It's a lot more if the patient is dialyzed or gets a pacemaker or has any surgery. Anyway, at fourteen days for the typical terminal ventilator patient, we're talking about a little over thirty thousand dollars each, and that's not counting professional fees.
"Some patients will last longer than two weeks, others will go quicker no matter what you do, but thirty thousand dollars is probably a nice, conservative figure. Now, what's thirty thousand times one million?" a pocket calculator was brought out.
"Thirty billion dollars," said Dr. Stine, with some awe in his voice. The others just raised their eyebrows in acknowledgment. One nurse muttered "wow."
"That's right. Thirty billion dollars. Not the national budget, but not a small amount either. And for what? To prolong dying two weeks? It seems ridiculous, doesn't it? Fortunately, those one million patients don't all end up in our ICU or anyone else's. Many die at home, or in the nursing home, or even in the hospital, in a quiet room with their family and no tubes or machines."
"But you would save some of those patients," said Dr. Simpson. "How can you decide ahead of time when it's inappropriate to be heroic?" This intern is a jewel, I thought. He must round with me more often.
"That's right. Statistically some of them might not die. They might go on and live on the machines. Like Mrs. Jackson."
"Who is Mrs. Jackson?" asked Dr. Stine.
"Barbara, tell him."
"Mrs. Jackson is an 80-year-old demented woman who has been here about six months. She was only in ICU for two of those months. Now she's up on Tower North. We can't get her off the ventilator. And no nursing home will take her and her machine."
The two interns remained silent.
"Look, the whole point is," I continued, "doctors have to make decisions. Ideally, life and death decisions should be made with the input of the patient and family. Mrs. Jackson's family, as I recall, was never given an option about what to do. Now they're stuck and we're stuck. And Mrs. Jackson's stuck. Ask her if she's happy. She doesn't even know what planet she's on. Should we have to spend thirty billion dollars to keep one elderly, otherwise dying patient artificially alive?"
There was no answer. It was time to change course.
"Pier, would you intubate Mr. Smilovsky if he were ninety-eight?"
"Well, it depends on the circumstances." A beautiful hedge. No answer at all.
"How about a hundred and eight?"
"Maybe." Now I had Dr. Simpson on the defensive, and loosing ground.
"How about if he was one hundred and ten years old, and you had documented evidence of metastatic cancer to every major organ."
"No, of course not, Dr. Martin."
"So, you're willing to draw the line somewhere. But you feel uncomfortable about Mr. Smilovsky because he doesn't have widespread cancer. Only pneumonia and sepsis, theoretically treatable conditions. I understand that. At least you admit there is a line to draw."
Dr. Stine spoke up. "Dr. Martin, how would you have handled Mr. Smilovsky's family?"
"First of all, I wouldn't call it 'handling.' Explaining the situation is what you really want to do, in terms they can appreciate. I've never met relatives that want their mom or dad or sister or brother kept alive as a vegetable on a machine. Well, I take that back. We had one a few years ago, but the daughter had a few loose bolts, so that doesn't count; she could never understand the difference between near-brain-dead and sleeping. Sensible, realistic families don't want relatives kept alive on machines when there is no hope of return to humanity. You have to discuss the situation in these terms.
"We should simply tell them the truth. 'Your father is eighty-eight. He's at life's end. Nothing we do will restore his mind or body to anything better than he was last week. The most we can hope to accomplish is a return to his former state, demented and bed-confined. If his breathing stops we're legally obligated to use machines to keep him going, unless you tell us otherwise. We'd obviously like to know his own wishes, but that's not possible, so I'm afraid it's up to you.'
"You'll be amazed at how often they will say, 'No, Dad wouldn't want that. Do what you can to make him comfortable, but no life-support machines.' Or, they might ask you for more information: 'What are his chances of getting off the machine once he's connected? What do you recommend? What would you do if this was your father?' The point is, you've established a dialogue and given the family realistic options. You can easily take it from there.
"If you get a clear sense that heroics and artificial life support are not to be used, you can appropriately order 'Do Not Resuscitate'; then, at least, everyone knows how far not to go. We won't have to call NASA. And we won't end up with tragic situations like Mrs. Jackson."
The Hippocratic oath, often recited by graduating medical students, was not
written by Hippocrates (460-370 BC).
It instead originated from members of a Greek cult, the Asclepiads, who worshiped the
god apollo. A critical review of the oath reveals that it is "steeped in sexism,
secrecy, self-aggrandizement, and sorcery." (Robin ED, McCauley RF.
Cultural lag and the Hippocratic Oath, Lancet June 3, 1995.) For example, in the
following quote from the Hippocratic Oath women are totally excluded:
"To consider dear to me as my parents him who taught me the art and to live in common with him and, if necessary, to share my goods with him; to look upon his children as my own brothers; to teach them this art if they so desire without fee or written promise; to impart to my sons and the sons of the master who taught me and the disciples who have enrolled themselves and have agreed to the rules of the profession according to the law of medicine, but to none others."
The authors propose a new
oath for modern physicians, presented on the next two pages.
A New Oath For Physicians
Robin ED, McCauley RF. The Lancet, June 3, 1995.
(Reprinted with Permission of The Lancet)
In the name of suffering humanity, with humility, compassion, and dedication to the welfare of the sick according to the best of my ability and judgment, I will keep this oath and stipulations:
I will be honest with my patients in all medical matters. When this honesty reveals bad news, I will deliver it with understanding and sympathy and tact.
I will provide my patients with acceptable alternatives for various forms of diagnosis and medical and surgical treatment, explaining the risks and benefits as best I know them.
I will allow my patients to make the ultimate decision about their own care. In circumstances where my patients are incapable of making decisions, I will accept the decision of family members or loved ones, encouraging them to decide as they believe the patient would have decided.
I will not sit in moral judgment on any patient, but will treat their illness to the best of my ability whatever the circumstances.
I will be empathetic to patients with illnesses caused by substances such as alcohol or drugs, or other forms of self-abuse usually believed to be under voluntary control.
Knowing my own inadequacies and those of medicine generally, I will strive to cure when possible but to comfort always.
I shall perform medical tests only if I believe there is a reasonable chance that the results will improve the outcome.
I will not perform any tests or procedures or surgery solely to make money. I will freely refer my patients to other physicians if I am convinced that they are better able than I to provide treatment.
I will freely furnish copies of medical records to patients or their families upon request.
I will do unto patients and their families only what I would want done unto me or my family. I will not experiment on patients unless the patients give truly informed consent. I will strive to instruct patients fully so their informed consent is possible.
I will remain a student all my professional life, attempting to learn not only from formal medical sources but from my patients as well.
I will attempt to function as a teacher for my patients so that I can care for them more effectively and can apply the lessons they provide to the care of other patients.
I will provide care to all patients seeking it, regardless of sex, race, color, creed, sexual preference, lifestyle, or economic status. In particular, I will volunteer some of my time to providing free care for the poor, the homeless, the disadvantaged, the dispossessed, and the helpless.
I will turn away no patient, even though with dreaded contagious diseases.
I will encourage my patients to seek medical opinions other than my own before agreeing to accept my opinion.
I will treat my professional colleagues with respect and honor, but I will not hesitate to testify openly about physicians and medical institutions that are guilty of malpractice, malfeasance, cupidity, or fraud.
I will defend with an equal fervor colleagues who are unjustly accused of malpractice, malfeasance, cupidity, or fraud.
PHYSIOLOGIC VOYEUR (poem)
She didn't ask to come,
They put her in here.
A few defined problems,
Nothing to fear.
Her bearings were lost
Several years past.
Eight decades of life
Had gone by so fast.
We charted her pulse,
Rhythm and pressure.
Intake and output,
And calorie measure.
SMACs and blood gases,
Enough blood to ration,
Were drawn and plotted
In orderly fashion.
Machines were invoked,
Consultants would say,
To breathe and to cleanse.
"My organ's OK!"
We gazed and we marveled,
At what medicine wrought.
With numbers galore
We'll win, some thought.
But alas, nature spoke,
And said that's enough.
What are you doing
With your high-tech stuff?
Alone, at last,
For peeking so long
With unseeing eyes.
This story is from "
We Can't Kill Your Mother!" and Other Stories of Intensive Care
As an intensive care doctor I've dealt with many ethical dilemmas, most involving decisions to start or stop artificial ventilation. One of the most difficult was that of Mrs. Virginia Tyson, an 80-year-old nursing home resident admitted to the medical intensive care unit April 27, 1989.
A month earlier she had fallen and fractured her right hip. She underwent a hip repair and returned to the nursing home, but had not walked since. Additional diagnoses were rheumatoid arthritis, emphysema, and cardiac disease. Dehydration, on top of her bed-confined state and chronic lung disease, led to acute respiratory failure. Shortly after arrival to MICU we had to place an endotracheal tube through her mouth and begin artificial ventilation.
The severity of her condition made it impossible to remove the tube and discontinue the machine ventilation. Although her acute medical problems were eventually corrected she could not be disconnected from the ventilator; each attempt led to severe shortness of breath. On May 4 she underwent tracheostomy, a procedure that places a short plastic breathing tube through an opening in the neck, allowing the larger and more uncomfortable mouth tube to be removed.
With tracheostomy a patient can eat while receiving artificial ventilation. The 'trach' tube is also much easier to care for than a mouth tube, and can remain in place indefinitely.
Mrs. Tyson's need for artificial ventilation did not improve after tracheostomy. She simply did not have the strength to sustain breathing without the machine.
Her closest family was two daughters, one of whom lived in a nearby state and the other far away, in Seattle. The nearby daughter stayed in town and visited her mother daily, and was in phone contact with her sister.
Mrs. Tyson remained mentally alert. She could not talk with the tracheostomy but was able to communicate with a pad and pencil. SIT ME UP. IS MY DAUGHTER HERE? MY THROAT IS SORE.
Reflecting a trait I've noted among the elderly in MICU, Mrs. Tyson never asked about her disease or prognosis. "We're trying to get you off the breathing machine," we told her often; she always nodded in appreciation but didn't raise any questions. She also never objected to the care we gave her.
I met with the daughter almost daily. A thin, pleasant woman, she was quite understanding about her mother's lack of progress. She never challenged what we were doing, and only asked that "mother be made comfortable." I felt no communication barrier between us, and also saw none between her and the MICU nurses.
Considering Mrs. Tyson's age, chronic illnesses, and ventilator-dependency, we raised the question of additional life support should other organs fail. Mrs. Tyson and her daughter requested no further life support or resuscitative measures, and a 'Do Not Resuscitate' order was entered in her chart.
No other organs failed and her lung condition did not improve. She remained stable, albeit ventilator-dependent. Our hospital allows for stable ventilator patients to go to a regular ward, so on May 9 we transferred Mrs. Tyson out of MICU.
At the request of Mrs. Tyson's internist I continued to follow her on the ward, and made another attempt to wean her from the ventilator shortly after transfer. When this failed I suggested that social service look for a nursing home that would take ventilator-dependent patients. Mrs. Tyson's original nursing home could not accept her back with the ventilator.
No matter how routine ventilators become for a hospital they are never routine anyplace else. In 1989 only two nursing homes in our metropolitan area accepted ventilator-dependent patients and they were both full. Still, we had no choice but to look for placement of Mrs. Tyson in a chronic care facility. She could not come off the machine without dying.
Attached to the machine she could in theory live many more years, although a sudden event, such as pulmonary embolism (blood clot in the lungs), could also end her life quickly. Her DNR status meant that we would not intervene if another bodily system failed, but it did not change the day-to-day care she needed and received. I felt sorry for Mrs. Tyson and her daughter, but there was nothing more we could do except continue medical care and attempt placement.
On May 15 I got a call from the resident caring for Mrs. Tyson. "Her other daughter is here and wants us to turn the ventilator off. She says her mother wants to die."
"I'll be right up."
In a few minutes I met this daughter, standing alone outside her mother's room The older of the two children, she appeared to be in her late 40's, physically similar but more aristocratic in bearing than her sister. As to temperament they seemed totally different. The Seattle daughter had only arrived that day, but wasted no time in getting down to business: "Dr. Martin, I want Mother disconnected from the ventilator."
"What? Your mother can't live off the ventilator."
"I know that. I know what I'm asking."
She had already learned about our failure to remove the ventilator. Calmly, I expressed amazement at her demand.
"Why all of a sudden?"
"Doctor it's not all of a sudden. Mother has always expressed her wish to die instead of being connected to a machine."
"But I've cared for your mother for three weeks. Neither she nor your sister said anything about turning the machine off."
"Did you ever ask them?"
"No, it never came up. We made her DNR, that was your mother's wish. But you're asking something totally different. If your mother had refused artificial ventilation before we began, it could have been withheld. Mentally competent patients have every right to make such decisions. But neither your mother or sister ever made that decision. What you're asking now doesn't make sense."
"I'm telling you what Mother wishes. My sister was just too timid to bring it up."
'Wow!' I thought. There's something strange going on here. What, I didn't know, but it got stranger.
"Let's go ask Mother now," she said. In disbelief I followed her into Mrs. Tyson's room.
There was no introduction to the subject. Not even, 'Mom, I brought the doctor in to discuss this matter.' Instead:
"Mother. Do you want to die?"
Mrs. Tyson nodded yes. There was no emotion to the nod. Just a dutiful yes.
"See," said her daughter. "Now will you disconnect the ventilator?"
It was time to be more forceful. I had a tough and determined woman on my hands. "Could I speak to you outside?" She agreed and we left Mrs. Tyson's room.
"I'm sorry but I cannot disconnect the machine. I respect your wishes and am not going to ignore your request. But I'm not the only one caring for your mother. This will have to be discussed with other physicians and the hospital's attorney. You have to understand, what you're asking has never been done before in this hospital. There is no way any single physician or nurse can just go in and disconnect a ventilator. We can't just walk in and kill your mother!"
"I'm not asking you to kill my mother. I'm only asking you to let her die a natural death."
"I know that's the way you see it. But you have to look at it from our perspective."
"When can you call these other physicians and the attorney? I want to get this resolved as soon as possible. Mother's suffered enough."
"How long will you be here this afternoon?" It was one o'clock.
"I'll stay as long as necessary."
"OK. I'll make some phone calls and see what I can arrange."
I called the chairman of our ethics committee (of which I am also a member) and explained the situation; he agreed to meet the next day, at noon. I then called the hospital attorney and outlined my understanding of the legal issues; she also agreed to the meeting. The nurses, social worker, and medical housestaff caring for Mrs. Tyson were also informed, and by 3 p.m. I had everything lined up.
I returned to the ward. This time both daughters were there. Somewhat to my surprise, the younger daughter expressed total agreement with her Seattle sibling but also admitted to being "not very good at verbalizing Mother's wishes." Verbalizing? She hadn't ever suggested what now seemed written in stone.
"Are you sure your mother wants to die?"
"Oh, yes. Mother told me that many times. She's said that for years. She just never got a chance to say it here." Her tone was unsettling, almost accusatory. I was glad a meeting was arranged for the next day. Let others hear this.
"Now," challenged the lady from Washington state, "will you disconnect Mother from the machine?"
"I already told you that's impossible for me to do. I've spent the last two hours arranging a meeting for tomorrow, at noon. Our lawyer and the chairman of the ethics committee will be there. Is that time OK?"
"Yes. We'll bring our
* * *
The next morning I came to see Mrs. Tyson on rounds and was immediately confronted by the head nurse.
"Mrs. Tyson's daughters were here last night. They were asking the night shift why Mrs. Tyson was being tortured, and why she can't be disconnected from the ventilator. Mrs. Tyson even wrote a note asking to be disconnected. The nurses are really feeling strained by their attitude. What are you going to do?"
I reminded her of the meeting and left it at that. Clearly, this issue had to be resolved quickly. I took some comfort in realizing that, having called the meeting, the decision was now out of my hands.
There were 12 people at the noon meeting, held in a library off the ward: nine from the hospital staff, plus Mrs. Tyson's daughters and their attorney. I adopted the role of moderator, to both provide medical background and make sure the daughters' wish was fairly presented. It was also important that everyone understand the background against which such an extraordinary request was being made.
After introductions I briefly presented Mrs. Tyson's medical history, emphasizing that at no time did she or her younger daughter ask for the ventilator to be turned off. I explained how she was made DNR, and that this did not translate into disconnecting the ventilator in an awake patient under any circumstances.
I also explained how, because of emphysema and other medical problems, her lungs were damaged beyond repair and that I saw no prospect for her living without the ventilator. I offered my best medical judgment that without the machine she would die within 24 hours.
Then, looking at the older sister I commented that "we were all surprised when you showed up and asked to have her machine disconnected."
I was not asking for a response but she volunteered one: "I'm truly sorry I didn't come earlier, but it was impossible. I am now here to see that Mother's wish is granted."
Looking toward the younger daughter I remarked, "I understand you are in agreement with this request?"
"Not only am I in agreement, it's what Mother wants. It's what we want. It's what should be done!" What conviction. Where had she been the last three weeks?
The floor was open for discussion. The night nurse on the ward spoke first. "Mrs. Tyson wrote me this note last night." The note was passed around. I had not seen it before. The ethics chairman suggested I read it out loud.
'PLEASE LET ME DIE. I DON'T WANT TO GO ON LIVING THIS WAY. Virginia Tyson.' Was either daughter present when she wrote this note?" I asked.
"No," said the head nurse. "Both had left the hospital."
The older daughter spoke up. "Look, I know this must seem strange to all of you, but you people don't know my mother. She never wanted to live like this. Mr. Barnes, the family lawyer, has known Mom for 40 years." She turned to the elderly gentleman, at least as old as Mrs. Tyson.
"That's true," he affirmed in a creaky and barely audible voice. "She told me many times not to let this happen." (Why had none of this been made clear prior to admission?)
The ethicist spoke up. "I'm Dr. Knowles. I was asked to come because I head the hospital's ethics committee. I don't know your mother and have not cared for her, but I'm a physician and have cared for many patients in similar circumstances, that is, elderly patients connected to a ventilator.
"I think I understand what you're asking. One problem we're all having at least something that bothers me is how this has developed. You are absolutely correct. The patient has a right to determine her destiny. The problem, from a purely ethical and moral perspective is, what is her real wish? I don't doubt for an instant your sincerity. It's just that I'm having trouble separating your mother's true desire from what she may be expressing out of guilt, perhaps for what her illness is doing to the two of you."
There! He said what we were all only wondering. Was Mrs. Tyson asking to die so as not to be a burden on her daughters especially the older one, for whom the constraints of time, if not distance, seemed more of a problem than the younger daughter? Or were the sisters merely conveying what was truly their mother's wish from the very beginning?
Mr. Barnes objected. "That's not true. Mrs. Tyson has always said she didn't want to live like this."
Dr. Knowles responded. "I don't doubt that, Mr. Barnes. And I'm truly respectful of the awful situation she's in. I don't think any of us would want to live under these circumstances. I'm just expressing why we're all so surprised, and why it's difficult to accept what you are asking. If she had made this wish clear from day one, and the family agreed, then I think ethically there would be less confusion on the issue. I'm not saying we'd take her off the machine even then. It's just that, from an ethical viewpoint, the request would seem less unreasonable."
"Are you saying you won't take my mother off the machine?" asked the older daughter indignantly. Good, I thought; let everyone see what I've been up against.
It was our lawyer's turn to speak. A former RN, she was compassionate and direct. "First, let me say that I understand your request. I really do. I know your mother has no chance of getting off the ventilator, and I accept that it may be her wish to die rather than go on living this way. The truth is, under state law we can't disconnect the ventilator. Your mother is awake and alert, and we can't do anything that will lead directly to her death."
"You mean I'll need a court order to stop the machine?"
"Yes, I'm afraid so. I must warn you, though, that no court in this state has ever granted such a request on an awake patient. And if one did, we'd appeal it. Also, I don't think there's anyone in this room who would personally disconnect your mother's machine."
"Speaking for myself," I said, "as one of her physicians I could not disconnect the machine and watch her die, court order or not. Would any of the nurses be able to do it?"
The three nurses in the room quickly shook their heads and the discussion was over. Mrs. Tyson's daughters had presented their demand, entirely reasonable in their eyes, but unreasonable from a legal and ethical perspective. The daughters had lost the first round but they were prepared for the outcome.
Without missing a beat the older daughter said: "Then we'll take mother home."
Over the next several days prodigious arrangements were made to transfer Mrs. Tyson to the home of a local relative. We made it clear to the daughters that she could not be released until we felt assured she would receive adequate care. Sending ventilator-dependent patients home is not impossible and we have done it before. It just takes a lot of planning and some commitment on the part of the family.
The hospital's attorney felt that we could not block Mrs. Tyson's discharge unless we had evidence that the daughters might harm her. We had no such evidence. In fact both daughters were accepting of our decision not to disconnect the ventilator, coming as it did from such a powerful show of force and determination. They cooperated with all the people involved in the discharge, including respiratory therapists, visiting nurses, and Mrs. Tyson's social worker. Arrangements to send a ventilator patient home ordinarily take at least a week, and they did not try to rush us.
On the evening of May 21, four days after our meeting, Mrs. Tyson was found
dead in bed. Her daughters had not been there for several hours and the previous
nurse check, only an hour earlier, had found the patient weak but otherwise stable.
Her death was deemed due to natural causes. No autopsy was performed.
What Mrs. Tyson's daughters asked for was tantamount to active euthanasia. The ethical and legal perspective with which we confronted their wish is clearly stated in a position paper published by the American College of Physicians: "Although a patient may refuse a medical intervention and the physician may comply with this refusal, the physician must never intentionally and directly cause death or assist a patient to commit suicide. Active euthanasia remains illegal in all jurisdictions of the United States. Even if legalized, however, such an action would violate the ethical standards of medical practice." (American College of Physicians Ethics Manual. Annals Internal Medicine, August 15, 1989, Volume 111, page 334.)
END OF SECTION D
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