The Torture of the Silent Innocent

I stood at the foot of the bed and watched as the man did- nothing. His eyes were closed but I did not think he was sleeping. Sleep is what people do to regenerate themselves after times of wakefulness and he was never awake. He had no intentional control over his bodily functions, even the most basic. A machine at his bedside was responsible for pushing air in and out of his lungs. He did not even need to open his mouth to receive air, it was supplied through a plastic tube connected to a hole in his neck. He did not eat. Nutrition was supplied via another plastic tube inserted through another hole in his abdomen. His "existence" was a totally passive one.

The only times when he was not passive were when he was unsedated enough to tug at his tubes or paw at their insertion sites. There was no way of knowing if there was any thoughtful intent to these movements, whether they were a mindlessly reflexive clawing at a perceived skin stimulus or a semi-conscious expression of discomfort and a desperate desire for the suffering to end. Either way it was a heartbreaking scene. As pitiful as his movements were they did not seem to illicit compassion from his caregivers, for their response to these movements was to employ someone to sit at his bedside and attentively wait to pull his hand away from his tubes to ensure that his “life” would continue.

I stood at the foot of his bed and wondered how a man’s life could be reduced to this, how a man so young could be expected to endure so much. He was younger than me, at an age when other men would be walking their daughters down aisles or bouncing their first grandchild on their knees. He had done neither nor would he ever. His brain damage was permanent. He would never speak, communicate or walk again. His shrunken 90 pound body would never leave a bed. His tragic state would never improve. His life was as "good" as it was going to get.

I wondered, "Why are so many working so hard to extend a life no one would want?" 

I have had hundreds of conversations with people over the years about how and in what circumstances they would want to be kept alive and how and when they would want to be allowed to die if their were so incapacitated. I have never met anyone who said they would want to live in a state such as his. The ability to communicate and the ability to recognize loved ones have been the universally expressed minimum functional requirements for wanting one's life prolonged. Some people say they would need to be able to do more, to care for themselves, feed themselves and have some independence, but no one with whom I have spoken has said they would want to live with less. No one would want to live like this man.

No one would want to live like this and yet people were fighting to keep him alive. They fought not just with breathing machines and feeding tubes but with antibiotics, surgical procedures and medicines to maintain blood pressure and heart function. As I looked upon his misery the question, “Why?”  seemed as if it was his silent scream. Why would doctors work so hard to keep a man alive in such a miserable state?

If asked, the doctors would reply that they had no choice, that it is “what the family wanted.” In this case, and the many others like it in which I have been asked to provide ethical guidance, this is the common physician response. My frequent reply is, “What right does a family have to demand an existence that no one, including themselves, would ever want?”

Physicians forget that in cases such as this families do not have “rights” as we typically define them. Family members and surrogate decision makers have responsibilities, not rights. It is the patient who has rights, including the right to not suffer, the right to undergo only those treatments which provide benefit, the right to not have life needlessly prolonged, and the right to die with dignity. If there is a “right” held by the family it is the right to the information needed to aide them in their obligation to make sure that the patient’s rights are recognized, honored and protected. Somewhere along the way this understanding has been lost, and family wishes have been prioritized over the wishes of patients. Patients have become victims of the whims and fears of others, stripped of basic human rights and dignity.

It does not have to be this way. If physicians and hospitals can muster the courage, if they can find within themselves a commitment to doing right by their patients, this needless suffering can end. Physicians are all aware of the common tendency of family members to speak for themselves and not for the person who is dying. Knowing what we know about the dying process it is time for physicians to stop the practice of unquestionably following directives of family members that serve only to prolong suffering . The odds against someone choosing to live in a non-communicative, near vegetative state are astronomically high.  Caring physicians have a duty to question the veracity of claims that such a life is desirable. 

In my experience it is far more likely that family demands to prolong the dying process are based on secondary gain rather than a belief that a patient would want to live in such a state. I have never met a patient who wanted to live as the patient described above, but I have seen a number of cases where a patient's death would have an adverse impact on the financial situation of their decision maker (loss of pension or social security checks, or loss of right to live in family home). I have seen many more cases where unresolved guilt has prevented family members from accepting the reality of death and letting go.  Since secondary gain for family members is for more likely in these circumstances than a patient wishing to be kept alive, one would think that physicians would want to make sure of patient wishes before yielding to unreasonable demands. This is not yet the case. Family demands almost always win out.

It might seem inconceivable that doctors would so easily allow suffering to continue, but there is a twisted logic to their response. The unreasonable demands to "do everything" are made by people who are able to speak and express anger and who frequently combine their demands with threats of legal action.  Angry families are in a position to make life miserable for any physician who dares to question them. The victim of their demands is unable to speak, unable to express anger, and unable to communicate the pain they feel. They are helpless and often hopeless. The easiest path for a doctor is to give in and go along.

It does not have to be this way. Their are things patients and physicians can do to change the status quo. Patients who take the time to make their wishes known in advance and who write them in clear and detailed fashion, provide their doctors with a powerful weapon against needless suffering. Physicians who educate themselves in ethical principles and in end of life care and draw strength and courage from their knowledge. Hospitals and medical staffs can build robust Ethics Committees that are knowledgeable and responsive to requests for assistance. In the hospital in which I work we have seen this make a difference. Our Ethics team responds within hours to consult requests, answering questions and assisting doctors in responding to unreasonable demands that serve only to prolong suffering. Our Medical Staff has a policy that clearly defines when care is no longer beneficial and provides a way to free patients from harmful care.

We are seeing change. The sleeping giant of physician advocacy on behalf of their patients is beginning to wake. Needless suffering is on the decline. The change is coming slowly, but it is coming. I am grateful to be a part of it.

- Bart

Patient Suffering, Persistently Prolonged

His life was miserable and there was no hope for improvement. There never is for nonagenarians with terminal illness. His failing kidneys could be supported with dialysis, but they would never recover their function. His damaged lungs could be supported by a ventilator, but they would never be strong enough to support normal life. His damaged brain, crippled by dementia and recurrent strokes, would never again allow him to regain speech or understanding. His quality of life was below what any reasonable person would desire, below what he had previously told others he would want and yet the doctors continued to do everything they could to sustain him in his suffering state.

Day after day a steady stream of physicians entered his room in the ICU. They often did not speak to him, for he was unable to reply. They checked the readouts on the machines, briefly applied their stethoscopes, and reviewed the day’s lab and x-ray reports. They entered their “findings” in the medical record, using words such as “stable” to describe the patient’s poor condition, and then moved on. A few of them, aware of the futility of their actions, wrote faint words of protest, saying in the record that the patient would be a good “hospice candidate” or that there was “little benefit” or that “comfort care” would be reasonable.

The boldest among them addressed the patient’s daughter. She kept a near constant vigil at the patient’s bedside, questioning every action and every medication, every turn of a dial or push of a button and documenting every response in the notebook that never left her side. The bold ones tried to encourage the daughter to accept the gravity of her father’s condition, the lack of improvement, and the reality that 90-year-old men with disease this severe did not get better.

She was always forceful in her reply, “Do everything!” By everything she meant everything. She wanted CPR, electrical shocks and breathing machines if his heart stopped, dialysis for his kidneys and feeding tubes for nutrition. Her father was NOT going to die on her watch.

And so the dance continued. Nurses were demoralized. They had chosen their profession out of desire to provide comfort and care and now found themselves prolonging the suffering of a man who seemed to have no advocate, no one who cared enough to say “enough.” Physicians knew they should let the patient go, to put an end to his suffering by getting out of the way and allowing the natural course of life to occur but they felt powerless in the face of the angry daughter with the power-of-attorney form. Weeks went by, hundreds of thousands of dollars were spent achieving nothing, and despair and desperation mounted.

So they called me.

I am the chairman of the ethics committee at my hospital. Over the last two years my fellow committee members and I have worked to develop policies and procedures to deal with situations such as the one in which this poor old man had found himself, policies that address what doctors can do when there is nothing to be done.

I responded as I do every time I receive these calls. I reminded the physicians that they are not obligated to do things that do not work, that no one has the right to demand futile treatment. The truth of medicine and of life is that not every disease can be cured. The ultimate disease, old age, can never be defeated. I reminded them that there are times when the only thing left for us to do is to let a dying patient die in dignity and comfort. I guided them through the process of documenting this reality in the medical record and informing the family. Then I met with the family.

The family conferences usually fall on my shoulders. They are almost always intense encounters characterized by accusatory outbursts and rage. I have been accused of everything from neglect to euthanasia and murder. I do my best to let the angry words bounce off of me and to gently affirm their feelings and still confirm the realities of their loved one’s illness. Sometimes there is reluctant acceptance, many times there are further demands and I am forced to explain that their demands will no longer honored. It is a grueling and heartrending process. Regardless of the process, ultimately the patients dies in comfort and with as much dignity as we can provide.

With each case I find myself wondering, “How did we reach this point?” These circumstances are so devastating to all involved, one would think we would find a way to prevent the suffering and pain that patients and families endure. How is it that we don’t?

In my experience there are several factors.

1-      Patients and families do not prepare for death.

In spite of its certainty, many families live in denial. I have been told by families that their 94 year old parent wanted to live forever. The irrationality of the statement was lost on them. In spite of the efforts of physicians and the mandates of Medicare to discuss end of life issues a significant percentage of patients do not communicate their wishes in advance. Even when they do, they often assign decision making responsibility to family members who are ill-prepared for the task.

2-      Fear

Doctors are afraid. They are afraid of conflict, afraid of negative interactions and afraid of lawsuits. In every end of life consult in which I am involved this is the major issue of physician concern. The irrational fear of being sued causes physicians to do things they know are wrong, things they know are worthless and useless, in order to placate demanding families.

3-      Time

Doctors are busy and dealing with angry families can take several hours out of a doctor’s day. I recently consulted on a case for a physician who texted me that he was not sure when he could return my call because he had 28 hospital patients to see that day.

Every hour a physician spends dealing with an angry family is an hour that he cannot spend with sick patients who might actually benefit from his care and attention. It is easier to spend a few minutes a day continuing the status quo then it is spending hours fighting a family.

4-      Lack of training and support.

It is hard to stand alone against an angry family. Their words and accusations may be irrational and unreasonable but the accusations still hurt. Most physicians have no training in how to deal with these circumstances. Further, most of these patients have multiple physicians, and one weak-kneed physician and undo hours of relationship building and persuasion. It is a terrible feeling to summon up the courage to confront only to find yourself undermined by your colleagues. It is easier to not make the stand in the first place.

5-      Cultural inertia

This is perhaps the biggest challenge of all. Change is always difficult. Physicians and hospitals have been yielding to unreasonable demands for generations. Inaccurate beliefs about legal liability, decision making authority and allowing natural death are deeply ingrained in hospital culture. Convincing physicians that it is okay to do the right thing is a daunting task.

My colleagues on the Ethics Committee and I recognize these challenges. As difficult as they are, we are committed to overcoming them, one important patient at a time.

-          Bart

PS: The case above is real. Minor details have been changed to ensure confidentiality. It is typical of the cases for which I am asked to consult. If there is any important take away from this post, it is that we ALL need to make our wishes clearly known to our loved ones. It is a gift to them and ourselves.

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