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As death draws near, patients and families face agonizing decisions End-of-life care

August 24, 2008 12:16 am

IT'S BAD ENOUGH to be dying of terminal cancer, but when your medical specialists are pulling you in opposite directions, advising conflicting treatment plans, it generates more anguish and requires the patient and the family to make some heartfelt decisions.

A patient I'll call Mr. X already went through surgery and radiation therapy for his cancer. Now, unfortunately, the biopsy of the lump that recently appeared shows recurrence.

He is in the care of an enthusiastic, dare I say gung-ho, surgeon who is urging him to have surgery. But his oncologist, together with his daughter, is asking him: "Is another five years of life, but in a nursing home with a feeding tube, really what you want?"

In cases like these, quantity is pitted against quality. Stay alive at any cost, or prepare for the inevitable sooner with less intervention? It's a decision that can put a terrible strain on the bravest patient and most devoted of families and medical staff.

AN UNCOMFORTABLE ISSUE

Sorry to confront you with the uncomfortable issue of dying here in the halcyon days of summer, but death is no respecter of seasons. And this case is a good illustration of what I am always telling my elderly, sick patients: That the time and mechanism of your death is not this inevitability, visited upon you by the almighty.

Rather, in this day and age, you can often have quite a lot of say about when and how.

In the old days it was easier. The patient had some terminal disease, the doctors tried every treatment they could, but the patient just died of "natural causes." The doctors felt OK as they had done their all, and everyone accepted it as a sad inevitability.

But that was before we clever doctors came up with so many life-prolonging treatments.

Now, it seems somebody has to be making god-like decisions about how and when the patient is going to die. And that can put a terrible emotional strain on everyone involved.

A TWO-WAY STREET

Controversy over what care should be administered --or withheld--goes both ways.

Organizations that provide help with a graceful exit and assisted suicide, such as Compassion & Choices (which now incorporates the Hemlock Society), and Final Exit Network, complain that people who ask their doctors for help "typically hit a stone wall."

That's what Jane E. Brody reported in her "Personal Health" column in the New York Times in March.

In difficult end-of-life situations, "Many doctors [see] themselves as forces of life, not death," Brody wrote.

But on the other side, there's the frustration of medical staff being forced to administer what they consider futile care because of a family's unrealistic ideas that their loved one will fully recover if we medics pull out the stops and implement their wishes to have "everything" done.

A case in point is one cited by Dr. Daniel Pound, a professor of family and community medicine at the University of California, who talked about terminal care at a recent conference on "Controversies and Challenges in Primary Care."

An 80-year-old with Alzheimer's had a chest mass and the family opted for "wanting everything done," Pound said. The woman ended up spending three months in the ICU on a ventilator with pneumonia, acute renal failure, myocardial infarct, with MRSA and other infections, swollen "from head to foot," fighting the ventilator and apparently suffering.

But the family wanted her a "full code," meaning doctors should use all life-prolonging treatments, including restarting the heart if it stopped.

I had a similar case a while back of a recalcitrant alcoholic who kept being re-admitted to the hospital in a coma from liver failure. In this case, there was a lot of friction between the hospital staff and the family, who also wanted "everything done."

The problem is that these decisions get all tied up with peoples ethical belief systems, and like the abortion controversy, a lot is dependent on the individual's feelings about the sanctity and inherent value of life.

TOUGH CONVERSATIONS

The situation is compounded by doctors not infrequently being bad at talking to their patients about these issues. Often times, it is "an emotional experience," noted Dr Pound. Also, families often interpret "do not resuscitate" (DNR) as "don't treat." What the order really means is do everything to provide comfort, but don't provide heroic, life-preserving measures.

The most extreme end of this decision-making is what Final Exit Network and Compassion & Choices help people with. In a New York Times column called "A Heartfelt Appeal for a Graceful Exit," Brody cited a letter from a deaf, crippled, bereaved 93-year-old retired teacher who felt she was merely existing and had had enough.

She wrote to Brody, "I very much want to die," and "oh for a pill to ease myself out but our society doesn't let me."

It is my opinion, based on seeing many patients who are suffering, that, with certain safeguards, people should be allowed to make this decision for themselves. Again, like the abortion issue, I consider it a matter of personal ethics and not something lawmakers should prohibit.

It would appear the legislators of Oregon are the only enlightened ones on this continent, as that is the only state that allows physician assisted suicide--though in reality, many a terminal patient's demise is hurried along by generous doses of pain medicines or sedatives that will suppress the respiration or the heart.

Often combined with this is withholding of food, and fluid specifically--which, contrary to popular misconception, is a peaceful way to expire.

A PARTIAL SOLUTION

At church the other morning, one of the congregants told of her father-in-law just having finally died after a long illness. She described the heartache her husband had gone through arguing with the other siblings over the whole business, and closed with the question, "Where's the Hemlock Society--or whatever it's called now--so my death is not like that?"

The principle of making some preparation for your death is a sound one.

With the aid of a living will, in which you can spell out what medical efforts you do or don't want taken in your final days, you may save untold heartache amongst the family members--not to mention possibly massive savings on futile medical expenses.

Dr. Patrick Neustatter is a family practitioner in North Stafford. Dr. Patrick Neustatter can be reached at
Email: newsroom@freelancestar.com.