Case: A Plan for the End

An 81 year old man arrived in the Emergency Room with subacute onset of shortness of breath. He had a history of Parkinson's Disease and hypertension, neither of which had caused any significant decline in his quality of life although he had noticeable intention tremor when he felt tired.

He'd been hospitalized many years ago for what sounded like a soft tissue abscess that took a long time to heal. After the hospitalization, he and his wife consulted a lawyer for help drafting an Advance Directive:

I~JOHN SMITH-- a resident of ANY County, USA, being of sound mind, willfully and voluntarily make known my desire that my dying not be artificially prolonged under the circumstances set forth below and declare that:

If at any time I should have or get a life-threatening condition when I cannot make my own health care decisions and I experience what I would consider an unacceptable quality of life (as certified by two physicians who have personally examined me, one of whom is my attending physician), then I do not want life-sustaining treatment, except for a temporary period as authorized below.

These are qualities of life I consider so unacceptable that I would want to be allowed to die:

I. Unconsciousness (chronic coma or persistent vegetative state) from which ability to think and communicate probably will not be recovered; or
2. Apparently complete, or nearly complete, loss of ability to think or communicate,
even though not unconscious, caused by brain damage that probably is not reversible; or
3. Total dependence on others for my care, because of physical deterioration that
probably is not reversible; or
4. Pain that will never be eliminated or that can be eliminated only by so much pain medication that ability to communicate verbally is lost.

I understand that I might experience an unacceptable quality of life (as indicated above or determined by my agent), but my physician might believe that temporary use of life-sustaining treatments probably would restore acceptable quality of life. If this occurs, then I want life sustaining treatments.

If I experience a life-threatening condition and a quality of life that is unacceptable to me, I do not want life-sustaining treatments started and, if already in use, I want them stopped (except for a temporary use as authorized above). However, if I appear to be in pain, I want enough medication to make me comfortable, even if my physician believes that might hasten my death or cause drug dependency. For purposes of this declaration, the term "life-sustaining treatments" includes, but is not limited to, the following:

1. Nutrition and hydration other than ordinary food and water delivered by mouth, if I
cannot eat and drink enough to sustain me.
2. All cardiopulmonary resuscitation measures to try to restart my heart and breathing if those stop.
3. Mechanical ventilation (breathing by machine).
4. Surgeries that prolong my life.
5. Blood dialysis or filtration to clean life-threatening substances from my blood, should my kidneys fail.
6. Transfusion of blood or blood products to replace lost or diseased blood.
7. Medications, when their purpose is to treat life-threatening conditions rather than
control pain (for example, antibiotics, chemotherapy and insulin).
8. Anything else that sustains, restores or replaces a vital body function.

In the absence of my ability to give directions regarding the use of life-sustaining
treatments, it is my intention that this declaration be honored by my family and attending physician as the final expression of my legal right to refuse medical or surgical treatment, and that they accept the consequences of such refusal.

I understand the full import of this declaration, and I have emotional and mental capacity to make this declaration.

SIGNED:

The ER told me he was "a DNR."

A chest X-ray revealed bilateral lower lobe pneumonias. I admitted him to the Med-Surg but it soon became apparent that he would need assisted ventilation. I tried BiPap but this wasn't sufficient to maintain adequate oxygenation, and I had to discuss options with him. Even though I had a sinking feeling intubation was going to be a rocky course for him, I thought there was a chance we could reverse his acute pneumonia and get him to recover a significant degree of his previous level of functioning. When I went to talk with him, he was in a moderate amount of respiratory distress but was still thinking clearly. I explained the situation to him and asked if wanted to be intubated.

"I think it's a good idea," he said.

"I have to warn you," I said gently. "There is a risk I might not be able to get you off the ventilator once you've been put on its support."

He nodded wearily. "I know," he said.

He was intubated on the second hospital day. Within 24 hours, it was obvious he was in ARDS. He needed markedly high pressure settings on the ventilator and could not be weaned from 100% FiO2. I had him on broad-spectrum antibiotics and steroids once he met criteria for ARDS.

His wife and daughter were absolutely terrific people. They were present at his bedside but also clever enough to leave the hospital for periods of rest. When I updated them about the patient's grave condition, they listened and processed the information without denial but with appropriate concern.

On ventilator day three, the patient's CXR looked much worse, pressure settings and oxygen had not been weaned, and he was beginning to go into renal failure. I consulted the intensivist who said, "There's not much else we can do. This is probably the end of his life."

I sat down with his wife and daughter. His wife asked me, "He looks worse to me. Do you feel you're getting to the point where there's nothing more to do?"

I had to say yes, and explained the worsening lab findings and inability to titrate the vent.

"We've talked about this many times," his wife continued. "He does not want to be in this kind of situation if the hope of recovery isn't realistic."

We talked some more about the options available: continue the current treatment, which was not producing the hoped-for effects, versus withdrawing care and making him comfortable. After some private consultation, his wife and daughter decided on the latter pathway.

I had him extubated and he died a few hours later, looking comfortable on a morphine drip to manage his dyspnea. Two days after his death, his wife sent me a flower arrangement, and I marveled at the generosity of families, who can remember the doctor when they have lost so much.

I encourage everyone to establish an Advance Directive and to discuss their values and preferences with their family and friends. I think Mr. Smith's example is a model for everyone to follow, although the limits to which you'd extend medical care might be different from his. Mrs. Smith was kind enough to allow me to reproduce and share the content of his Advance Directive, after altering their surname. The reasons why I think Mr. Smith's Advance Directive is so successful:

• It describes, in simple and specific words, the most important qualities of his life, the ones he wished to preserve more than life itself.
• It describes what should be done before life-sustaining treatments are started and what should be done once they have started but have not been effective.
• It allows for temporary use of life-sustaining treatments, depending on the recommendations of the attending physician.
• It give specific criteria for how the decision to withdraw care should be made (i.e. by two physicians, one of whom is his attending).
• It specifically lists what he and his family consider life-sustaining treatments, including artificial nutrition and IV fluids, and gives a guideline for evaluating other interventions not listed ("Anything else that sustains, restores or replaces a vital body function")
• It acknowledges and allows for the principle of double effect in the use of palliative treatments; in other words, the possibility that medicines used to make a person comfortable may hasten the end of life.

There is so much more to an Advance Directive than "full code" versus "DNR." Please investigate the subtleties for yourself.

Comments

[Mike]

Great Post!!!

[TBTAM]

Fabulous post.

One question - the relationship you have with this patient clearly made a huge difference in down. Any thoughts on how things might have been different (or the same) if is care were to have been managed by someone who did not know him (ie, a hospitalist?)

[Theresa]

I went to a very strong hospital-based residency, where I learned the foundations of ICU medicine. Rural hospitals do not typically have their own intensivist staff, so general internists and family doctors often have vent privileges, etc. I've been involved with the hospitalist transition for several years now and I have to say, these years have provided advanced ICU experience for me.

One of the local intensivists is my former ICU preceptor from residency. We have a great relationship and he is always teaching me what I don't know.

[sara]

Ok, now I have to ask an unrelated question - how did you get ICU training and learn to do vent settings and manage ARDS and all that?

[me]

Excellent post, but please take your state's laws into account. For example, Illinois has a statutory Health Care Power of Attorney that covers the amount and kinds of care you wish in such circumstances and gives a person you trust ability to act on your behalf, according to your wishes, should you be incapacitated.

[Donna]

My husband and I both have them. They are in no way similar to each other. I have a pregnancy clause in mine, and his is much slower to pull the plug. We decided to put our affairs in order as an example for my parents to get theirs figured out. I don't want any issues between my sister and I when we are required to make those decisions for them.

They are great to have, but I really think getting mine jinxed me when I delivered my daughter. I never expected it to be consulted during that hospital stay.

[rlbates]

Very important. I have a spouse who has trouble talking about this. I have my advanced directive and have tried to make sure he knows my wishes. I can't say I know his, due to his reluctance to discuss it. Not sure he will follow my wishes, but have told my sisters. I hope they will help him.

[Eric]

That's one reason why, in states with POLST Paradigm, I'm such a fan of the subtlety of approach inherent in the Physicians Orders for Life-Sustaining Therapy - a veritable menu of options for end of life care, with the force of law that comes with actual doctors' orders.

Check out more information at www.polst.org , a service of Oregon Health and Sciences University.

Eric