April 04, 2009

Quality of Life at the End of Life

Thursday, Terry Gross interviewed Robert Martensen, emergency room doctor, bioethicist and author of the newly published A Life Worth Living: a Doctor's Reflections on Illness in a High-Tech Era.

It was an incredible and deeply personal interview with a man who has long thought about our country's obsession with extending life despite the fact that for many dying people, the extended time dying can be hellish.

The reason the interview was so deeply personal was Dr. Martensen was taking the interview from Santa Cruz where he was visiting his 91 year-old mother who is dying. The questions and concerns that he addressed in his book were precisely the questions and concerns that he was facing with his aging parent. His mother had been able to live on her own until January, but now she is increasingly suffering dementia and must have round the clock care. And as her representative, he has to decide what type of treatment should be given at this time.

One of the dilemmas Americans face is to what degree should you go to extend the life of someone at the end of their life with the technology available? We have some tremendous medical technologies, but no really good guidelines for when to use that technology. Hospitals and doctors feel compelled to do everything within their power to use technology unless (and even if) one has signed a medical directive that declares that one does not want life-sustaining treatment if it will only prolong dying.

Yet, even when a person has a medical directive, many times when they are unable to make their own decisions, family members will be asked about whether treatment should be considered for their elderly parent. Dr. Martensen had two examples from his own experience that showed how pervasive this practice is.

He tells how he had gotten a call from his mother's attending physician in February that his mother's blood pressure and heart beat was failing and her physician had asked permission to implant a pace-maker. Now Dr. Martensen is a very experienced physician himself, so he knew that for elderly people the symptoms that her doctor described are often due to a lack of fluids. So he asked the doctor to try giving more fluids to see if this was the problem, and it was. Dr. Martensen then said that he realized at that point the doctor was biased in favor of life at all costs rather than respecting the explicit written directive of his mother. So she now has another doctor who is more concerned with respecting his patient's wishes and her concern about the quality of life she experiences at the end.

The other experience Dr. Martensen related was in regards to the last days of his father who died of progressive lung disease when he was in his 80s. His father had also signed a medical directive and had made sure the family was aware of his decision. Nevertheless, when his father's lung functioning diminished past a certain point, Dr. Martensen was asked whether to put his father on a mechanical ventilator. Dr. Martensen explained to Terry that although ventilators are a blessing for someone using the artificial help as a bridge to regaining full functional use of their lungs, when someone is dying from lung disease, the use of a ventilator is cruel because the only outcome for the person is they will die with great pain and suffering or in a deeply drugged fog from the use of the ventilator. Because the breathing instinct is so deep within our bodies, to put someone on a ventilator requires them to be paralyzed at first so they cannot remove the ventilator and then as long as it is in, the only way to keep them from tearing it out is to drug them into an almost comatose state - hardly a way to give some quality time to someone whose only freedom from that state will be death. As Dr. Martensen says, most lay people have no idea that this is the consequence to their loved one in allowing a doctor to put them on a ventilator. And he says it is much, much easier to put someone on a ventilator than it is to take them off.

He recommends that doctors have a discussion with their patients and their families about what is important for the last days.

Furthermore, when people have a conversation with their doctor about what they want for themselves when they get close to death, the costs are lower as well.

Baohui Zhang, of Harvard Medical School in Boston, and colleagues report that patients with advanced terminal cancer who had an end-of-life conversation with their physician had significantly lower health care costs during their final week of life compared with those that did not ($1,876 versus $2,917, respectively). Higher costs in that final week were significantly associated with a worse quality of death. Amresh Hanchate, Ph.D., of the Boston University School of Medicine, and colleagues found that end-of-life costs were 32 percent and 57 percent higher for blacks and Hispanics, respectively.

"At life's end, black and Hispanic decedents have substantially higher costs than whites. More than half of these cost differences are related to geographic, sociodemographic and morbidity differences," Hanchate and colleagues write.

As we look at reforming our healthcare system, it would be good to review what it means to have a life worth living.

Posted by Mary at April 4, 2009 02:27 PM | Health/Medicine/Health Care | Technorati links |

I certainly know about ventilators. A person who holds my living will declined a ventilator for his dying wife because a brainstem stroke knocked out automatic breathing. A ventilator would have been cruel -- the removal would have been the death that was approaching anyway.

Unfortunately, I am going to outlive him. So now I will have to choose someone else who will make the right decisions.

Posted by: Scorpio at April 6, 2009 10:10 AM

It must be a really tricky area of the law. When people loose the ability to speak for themselves, sometimes the circumstances aren't quite what they imagined when they wrote the living will. Otoh, who are we to imagine what they must have wanted when they wrote it? I pity judges who have to decide these cases and interact with people at their most vulnerable.

Posted by: Flo at April 6, 2009 08:35 PM

We are conducting a survey of people with cystinuria and other kinds of kidney stones. The survey will look at issues regarding the quality of life experienced by people with kidney stones. We have contacted you because you have kidney stones and: 1) participate in the Cystinuria Support Network; 2) visit the International Cystinuria Foundation website, cystinuria.org; 3) you are a patient of Dr. David Goldfarb in the Urology Department at St. Vincent's Hospital. The survey is being conducted online by Dr. Goldfarb. The survey will require less than an hour of your time. Your privacy will be protected. We are conducting this survey in cooperation with Thomas Jefferson University in Philadelphia. The study has been approved by the Institutional Review Board of St. Vincents Hospital and Thomas Jefferson University. If you would like to participate in the study please click here or paste this link into your web browser:

Posted by: mahesh at April 8, 2009 05:36 AM

I can understand disconnecting SOME of the equipment, but ventilators and feeding tubes, I am not so sure. ESPECIALLY feeding tubes. Everybody has to have food. What you'e doing is starving the person to death. I am not sure it's ethical to starve someone to death, even a person with a Living Will.

Landover Baptist Church

Landover Baptist Church

Posted by: Landover123 at April 14, 2009 09:43 PM