A short report on California Public Radio reviews the work of Ken Murray, MD who noticed several years ago that when his physician colleagues died, they rarely died in a hospital. He hypothesized that they had made a choice to die at home because they had seen too much unnecessary and futile aggressive treatment given to patients most likely to die.
Unfortunately, many doctors are not willing or able to talk about dying. According to some studies, only about 10% of doctors nationwide have had conversations with their patients about death and dying which means that many patients may not be told the truth about their illness.
To support this asserted communication failure, the NPR reporter who produced this piece interviewed a woman whose husband died of an inoperable brain tumor. She felt that the doctors pressed her to undertake treatments that adversely impacted the quality of his life and may also have shortened his life.
In another article, Dr. Murray shares the story of an orthopedic surgeon who consulted a colleague who diagnosed him with pancreatic cancer. Despite the fact that this physician was an expert in treating pancreatic cancer, the survival rate was less than 15%. Given the odds, the orthopedic surgeon closed his practice that very day and died 9 months later having spent his remaining time with his family.
Dan Gorenstein also reported on this topic on NPR’s “Market Place” commenting on the extraordinary cost of aggressive care when an older person is fighting a serious illness. About 20% of all Medicare costs are spent in the last six months of life at the cost of roughly $300 billion dollars.
The most compelling and thorough presentation on this topic is a 20 minute Radio Lab pod cast entitled, “The Bitter End”. Sean Cole interviewed doctors at John Hopkins regarding the results of a study of physicians’ attitudes towards treatment options if they are in a coma. A graph showed that 60%-90% elected not to have any treatment for most options (90% rejected CPR). However, more than 80% would want medicine for pain management.
Listen to the interview to hear how doctors feel about extraordinary treatment and how strongly some of them express their wishes. Note the description about what being on a ventilator is like and take note of the comment by a doctor who says to a colleague while they are working on a very sick person in the ICU, “If this happens to me, kill me.” It is also fascinating to hear Cole interview his own father (a doctor) who makes his advanced directive known.
WHAT IS THE “TAKE AWAY” FROM THIS POST?
• Doctors are less likely to elect aggressive treatment when they are faced with a serious or fatal medical problem.
• Doctors know more about the consequences both of certain illnesses and of the likely treatments.
• Doctors may not share information about the impact of treatment on the quality of life. They may be more likely to recommend treatment different from what they would choose for themselves. You may have to push hard for this information.
• Aggressive treatment and intrusive procedures may complicate your life, degrade the quality of your time during or after the treatment.
• Aggressive treatment may permanently impact your quality of life, and/or cause your life to end sooner than with hospice and palliative care.
• Ask your doctor(s), “If you were facing my illness, what treatment would you elect to have?” Or, “If this was your mother (dad, wife, relative), what would recommend?”
• You must be alert to evaluate both the meaning and value of treatments as well as the consequences for quality of life.
• NOW is the time to have serious conversations about your own mortality as well as those you love, not when you are in the ER and in the midst of confronting a serious and possibly life threatening issue.
An article was published in the Philadelphia Inquirer on May 28th, 2013 entitled: “Alive but at what kind of quality of life?” (pg. A-3) by Stacey Burling. The article is not available unless you are a digital subscriber to the Inquirer.
The author reports on the results of two critical care physicians who have begun to research the consequences of using breathing machines for two weeks or more on seriously ill patients. Their research (often called a ”meta-analysis”) involved reviewing 124 studies from 16 countries – an impressive comprehensive study. Results showed that 30% of the patients who had been on ventilators for two weeks or more died while in the hospital once the ventilator was removed. Furthermore, 60% died within the year. Information on the results for remaining 10% was not a part of the study.
Studies show that medical research seems to focus predominantly on how to keep patients alive and/or getting ahead of the life threatening condition. Rarely is attention given to the quality of life after an intervention. The medical field has developed powerful technologies and medicines designed to stave of dying but one of the unintended consequences has been keeping our bodies alive when there is little apparent quality of life. This is becoming a major concern among some physicians.
While medicine rightly focuses on preventing death, the reality is that we are all going to die at some point. Because of this, the use of radical or high tech interventions to keep us alive needs to be weighed against the impact of these interventions on the quality of life of the patient as well as their family after the intervention. Age will have a lot to do with choices since interventions for a younger healthy person may have a better prospect of full recovery compared to an older person.
It can be a tough judgment call.
Consideration of the use of these technologies on older frail adults is especially critical. This is especially true of both CPR and ventilators.
The following applies to all who are placed on a ventilator regardless of age.
• You will have air pumped in and out of your lungs which will keep you alive.
• You will not be able to speak.
• You may be heavily medicated.
• You may be paralyzed with drugs so you won’t “fight” the rhythm of the ventilator.
• You will be hydrated and fed liquid nutrition by tubes.
• You will be catheterized.
• You may have a rectal catheter because you will only be receiving liquid nutrition which means you will likely have diarrhea.
• You will lose the strength of muscles you use to breathe which will necessitate physical therapy at the end of treatment to regain your breathing capacity.
• You may never regain sufficient capacity to be free of supplementary oxygen which means carrying oxygen with you 24/7. (While there are exceptions, some physicians say that beyond 2 weeks on a ventilator may result in not being able to survive without it.)
• You may be intellectually compromised due to low oxygenation of your brain related to your condition either permanently or temporarily.
• Most physicians (85%) when polled said that they would not want to be on a ventilator if they were unconscious and needed ventilation.
• You may recover completely!
It is clear from this article that doctors don’t know in the long term what will happen to the quality of your life when you are placed on a ventilator. You should consider carefully under what circumstances you would want assistance with breathing and talk it over with your proxy, your family, and your physician. Include, if you wish, a statement about how to assess (as a percentage) your likelihood for survival and recovery. For example, if your family and proxy were told that you had a 10% change of complete recovery would you want to have this treatment?
Be aware that this statistic also indirectly states the reverse: that you have 90% chance of NOT recovering fully. Would you want to be ventilated? How long would you be willing to be on a breathing machine?
Remind your family that an effort to obtain an honest statement from the doctor can be compromised by his/her lack of knowledge about the long term quality of life following ventilation because there is limited research on this topic. And remind your proxy and family that many doctors do not like to give bad news. They prefer instead to instill hope because it’s less painful for them and for your family to hear.