How do Healthcare Professionals Help Patients and Families Confronting End of Life Dilemmas?

It was a beautiful setting, a few miles outside of Valley Forge, on the lovely campus of Immaculata University. Just a few days after the death of Terri Schiavo, I joined Tara Friedman, M.D., medical director for VITAS Innovative Hospice Care® in Philadelphia, to participate in an ethics presentation to well over 100 retired nuns living at Camilla Hall on the university campus.

Dr. Friedman spoke eloquently about artificial nutrition and hydration to this gracious and very pleasant group. My own presentation was brief: a few words about Terri Schiavo, a few words about autonomy and honoring patient choice. I told the audience that most terminally ill patients choose to have a feeding tube removed, either because it is prolonging life unnecessarily or because it has made the dying process more complicated.

It was as I was leaving, walking down the hall toward the exit door, that the tall, gray-haired nun in full habit approached me and said forthrightly, “If you are so right, why were you so quiet?”

I knew instantly that she was referring not to me personally but to hospice in general. I also knew that she was asking the right question. In the midst of all the turmoil surrounding Ms. Schiavo’s death, where were the voices of reason? Where were the patient advocates? Where were the caregivers telling the hospice families that they had made the right choices? I had heard these questions echoed among hospice staff through e-mails and phone calls. I had also heard these concerns in cases brought to hospice ethics committees in the past month.

Take the case of Wilma A., a resident in a nursing home, 91 years old, in a persistent vegetative state for several years due to numerous strokes. She lay curled in bed, fed through the stomach by a surgically placed gastronomy tube. She was given good nursing care and seemed comfortable.

Her daughter Jane, a devout Catholic, came to the conclusion that what was being done for her mother was not right. She visited her mother every day, remembering the busy, friendly, deeply religious woman Wilma had been. Jane believed that if her mother were able to decide, she would not want to be kept alive in her present condition. So Jane got up the courage to ask her mother’s doctor to stop the tube feeding and let her mother die in peace.

“That would be both immoral and illegal,” the physician replied. “You have no right to ask me to do such a thing.” This made Jane feel very guilty. When she talked to the nursing home administrator, he was sympathetic to Jane’s struggle but told her that only a doctor could order the tube feedings stopped. Confused, guilty and overwhelmed, Jane turned to the hospice chaplain. They spoke for awhile, and he convinced Jane to go to the hospice ethics committee—which she did.

The hospice ethics committee was able to assure Jane immediately that the opinion of the physician was his own moral judgment and that the nursing home administrator was incorrect when he said only a doctor could order tube feedings to be stopped. Then, quietly and rationally, the committee began to examine and discuss with Jane her questions about feeding tube issues.

It’s a conversation that occurs at scores of hospices each day across the nation. It’s a conversation that has become more difficult because of the Terri Schiavo case. But it’s also a conversation that has become more necessary.

Dr. Richard B. Fife is chairman of VITAS Healthcare Corporation’s National Ethics Committee. This month he leaves his position as VITAS’ vice president of bioethics and pastoral care to serve as president of the Foundation for End-of-Life Care, a proponent of education and advocacy in palliative care.

There are many things in life that are out of our hands. When facing end-of-life decisions, having a living will puts you in control even if you can’t speak for yourself. Five Wishes, an easy to complete Advance Directive kit, is a gift to your loved ones ensuring your choices. It is a document that allows you to choose your caregiver, the medical treatment you want or don’t want, how comfortable you want to be, how you want to be treated, and an opportunity to leave messages to your family and friends – times to remember, thoughts and feelings, and your hopes for them.

Hospice of Palm Beach County (HPBC) is committed to educating the community on the benefits of identifying and communicating healthcare decisions using Advance Directives. To receive a copy of Five Wishes, compliments of HPBC, register online at www.hpbc.com and click on the Five Wishes button or call (800) 245-9150. Don’t wait! Your decision matters now!

If your organization would like a speaker on Advance Directives call (561) 227-5146.

In the late 1970s, a neurosurgeon at New York’s St. Luke’s Hospital operated on a beautiful, young, rising soprano who studied opera at a major New York conservatory. She was delightful, full of the joy of living, and orphaned at an early age to raise her teenage brother. Having already overcome significant adversity, her only impediment to a blossoming career and a happy life was a brain tumor. The tumor appeared benign and its resection was considered routine. Dr. Jim Hughes, the neurosurgeon, was top notched, capable and clinically at the top of his game. There was not much that could go wrong.

But as happens in the arcane realm of neurosurgery, things went terribly wrong. After the skull was opened and the surgeon began to remove the tumor, the brain increased in size and poured out of the brain cavity. Jim was devastated. He and the anesthesiologist performed all of the maneuvers to shrink it back to size. It was no use. More and more brain fungated out of the skull. In a fit of absolute frustration, the surgeon gathered a fistful of brain tissue and disgustedly threw it against the wall. Despondent and defeated, Jim turned to the resident surgeon helping him with the case and said: “She will not live. Close the skull as best you can.” Overwhelmed by a claustrophobic sense of helplessness, he rushed hurriedly from the room.

It was my night to take care of the patients and Dr. Hughes came to me. In a voice filled with anguish and despair, he laid down his instruction. “Arthur, she may live a couple of days but she will not survive. It would be best if you allowed her to die. There is no point in prolonging the suffering.”

An hour later, the patient arrived in the recovery room. Not culpable of any misdeed, her heart and lungs functioned perfectly. Her brain had betrayed her. I, in my innocence, could not let her die. As a young male, perhaps enamored by this perfect essence of femininity, I found I could not neglect her in her hour of need. She was blond, strikingly beautiful, and though not responsive, she was a true Sleeping Beauty, the embodiment of a concept that defied abandonment. I cared for her meticulously throughout the night with the concern of a shepherd guarding his injured lamb. I was too inexperienced and naive to do otherwise.

For the next month, she became my charge. Her brother came in daily, cried, and stayed for a while and left. I performed every aspect of her care that required correction. While her body remained perfectly intact, she remained in a deep coma, without any sign of response. Every morning I would jab a large needle into her left groin and withdraw blood to be sampled. Every afternoon I would make whatever adjustments were necessary. My patient and I endured the ridicule of more sanguine colleagues who laughed – but did not interfere – with this ritual. I admit that without her active mental participation, I began to think of her as a “thing” devoid of human characteristics.

After more than a month, the neurosurgeon decided to try an operation, a ventricular-atrial shunt, to relieve the pressure in her brain. Since I was her de-facto guardian, he allowed me – under his tutelage – to perform the entire operation. I drilled the hole into her skull, inserted a long needle into the right lateral ventricle, and was rewarded with the presence of clear, white fluid. The needle was connected to a thin plastic tube inserted into a vein in her neck. Perhaps futile, perhaps extravagant, the operation was at the very least, an attempt to remedy a catastrophe. Sometimes the human condition demands an act of expiation.

The next morning, to our utter surprise, the patient woke up. She actually sat up in bed, talked to us and ate solid food. Because of her youth, her recovery was rapid. Her sole disability was dyslexia. Everything she attempted to read was backwards. Given the immensity of the alternatives, dyslexia was a small price to pay and no great impediment; her memory was sharp.

Six months later on a Sunday afternoon, I was invited to her recital. She gave a concert where she sang beautifully. She possessed a superb, operatic voice, with great control, range and command. Her brother, her only relative, was in attendance. To me, it was a triumph of perseverance over adversity. Medically, it was probably a miracle. At the reception following her concert, I summoned up the courage to ask her: “Did you feel any of those needles that I stuck into your groin?”

“Yes,” was her response, “and they hurt like hell.” Some 27 years later, and still mindful of this acknowledgment, I never dehumanize a patient.

We really don’t know what Terri Schiavo can or cannot perceive. Admittedly, Terri has been unable to meaningfully interact with her environment for more than 10 years. My patient was in a coma for only a month. Yet Terri’s condition demands answers as to a timeless question: what is life? More profoundly: how do we respond to individuals who don’t conform to our definition of life? Do we have the right to terminate a life that we don’t find meaningful? Or are we simply imposing our biases on a defenseless human being? Our response says more about societal values than it does about the legislative or legal maelstrom.

My story about the opera singer is true. The book is called Seizure. It was made into a television movie starring Leonard Nimoy. I have fought death for too many years as a doctor to concede even one patient. I still fight until the last light goes out.

Dr. Palamara, vascular surgeon practicing in Hollywood, can be reached at (954) 989-5533 or aepal@bellsouth.net.

The very public conflict over Terri Schiavo has produced a debate from the halls of Congress to the doctor’s lunchroom and hopefully to the family dinner table. Opinions, charges and misinformation have been rampant. We in the medical profession have an obligation to evaluate problems like Schiavo and others based on evidence based medicine, knowledge of pathophysiology and established ethical principles.

Schiavo had medical coma secondary to hypoxia after an arrhythmic arrest. The coma evolved into persistent vegetative state (PVS). PVS is a well defined condition described in a position paper by the American Academy of Neurology. Patients in PVS can have sleep-wake cycles, some response to light and noise and some basic reflexes. They do not have willful activity or cognitive behavior.

Medical coma is different from traumatic coma. Although prolonged traumatic coma still carries a dismal prognosis, there is a higher incidence of recovery of some cognitive function. After 15 years can anyone think there is a reasonable chance for recovery in any kind of coma?

How do we proceed at the bedside in a patient with persistent vegetative state? Bioethics and Florida Statute 765 are fortunately in solid agreement. In incapacitated patients the surrogate decision maker should make the decision based on what he/she believes the patient would choose if the patient were able to choose for him/herself. An oral expression is as valid as a written living will.

A living will can by the way take any shape or form that the patient chooses. It need not be the model in the statute. One living will form actually asks that the patient be comforted with warm oil massages if terminal. A living will could state that the patient wanted to receive nutrition or hydration until death. Most advance directives, however, ask that if the attending physicians feel there is no chance for recovery, then only palliative care should be given.

What if there’s no written directive or clear oral declaration? A surrogate decision maker can decide based on what he/she thinks are the patient’s best interests. Who decides best interests? Is there a potential for abuse? One would hope that medical professionals and the surrogate decision maker do not proceed frivolously. These decisions should be made only in cases with terminal or vegetative conditions. Our training should enable us to differentiate terminal or vegetative from disabled.

Finally, what happens when nutrition and hydration are withdrawn? The physiologic changes include ketosis, uremia and release of endogenous opioids. These conditions are individually and collectively associated with sedation. Appropriate end of life care includes moist compresses or swabs to the lips and oral mucosa if there is concern about patient discomfort. Withdrawal is not starvation. It is no longer artificially interfering with the dying process that has occurred.

Hopefully, the Schiavo case will result in many more people discussing and actually formalizing their advance directives so ambiguities will be less common. Until living wills are universal, however, let’s hope that health care professionals use sound clinical reasoning based on the best available evidence to help make decisions and guide patients and families.

Glenn Singer is Chair of the Bioethics Committee at Broward General Medical Center and past president of the Florida Bioethics Network.