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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