A nurse with fatal breast cancer opts for care oriented to quality of life rather than quantity of life.

This article in the Washington Post  in September 2015 articulates a clearly chosen path for a breast cancer patient to seek comfort care through a palliative approach rather than aggressive care which was discerned to not bring much relief, extend her life, or offer a good quality of life. The patient, Amy Berman, is a nurse with a clear eyed perspective on her cancer enabling her to choose quality of life over quantity of life. To date, she has had five reasonably good years without the debilitating effects of chemotherapy.

Note that the treatments she received to shrink tumors on her ribs involved radiation, not to kill the tumor, but to reduce it and thereby provide her with greater comfort with less pain. Palliative medicine can sometimes be aggressive in the service of creating a better quality of life. Surgery is another option, although it has not been part of Amy’s treatment.

What is unfortunate is that unlike Amy, many patients are neither medically trained nor sufficiently experienced to see that there are options other than aggressive care. “Curative” (aggressive treatment approaches) treatment is often selected because of a diagnosis that naturally creates anxiety about mortality. Added to this is our faith and hope that technology and medications can solve our problems.

Further pressure comes in the form of advertisements from hospitals and treatment centers. There is increased advertising offering solutions to the dilemma of how to respond to a diagnosis of cancer, heart disease, etc.  Some imply that you should seek out “this” or “that” treatment because “you owe it to your loved ones…” that can be seen by some as a thinly veiled guilt trip.  Given that some new treatments are showing great promise, the challenge is to sort out what is realistic from what is appealing because it eases our anxiety.

At the very least, the medical establishment needs to make these options clear to patients. It requires that doctors talk honestly with you about the treatments, probability of success, and cost in terms of side effects. Doctors vary in their ability/willingness to engage in this conversation with their patients and their families. An “optimism bias” lurks here that naturally causes humans  to embrace the positive solution that they most want.  Combine this with doctors wanting to give you hopeful news and there is a potent force to ignore the down sides of aggressive treatment.  Do you think that your doctors are capable of talking honestly about your mortality?

You might want to consider reflecting on what you would want if you were diagnosed with a fatal cancer and what choices you would make if you had a 5% chance of recovery or a 50% chance of recovery.  It’s hypothetical, of course, but by sharing your thinking you can inform those you care about as to your initial thinking.

Ethan’s Blog: What’s it like to have cancer and fight it with chemotherapy?

Ethan Remmel, a forty year old professor of Psychology who, when diagnosed with Stage 4 colon cancer, chooses to write a blog.  In ten entries he takes the reader from the time of diagnosis to his farewell posting. His blog is a valuable contribution from a thoughtful, articulate, and honest patient enabling us to understand his thoughts and feelings about choices he makes related to his cancer’s relentless progress.  Additionally, he shares his struggle with “quantity of life” versus “quality of life”. He enhances our understanding of the positive and negative aspects of chemotherapy and vividly describes the complex aspects of the fatigue he experiences.

One of the surprising things that Ethan mentions is losing a sense of identity because so much of his life, energy, and passion is taken from him by the chemotherapy side effects.  It left him lonely, dispirited and discouraged.

Because Ethan lived in Washington State, he was eligible for and received a prescription for medicine that would allow him to end his life.  His response to filling the prescription was a common one –  just knowing that he could make the choice to take the medicine gave him relief. He was in charge whether he exercised that option or not.

( NOTE: At this point (January 2017)  seven states and the District of Columbia have provisions for taking one’s life. Sixteen other states are considering some form of legislation.  Public opinion polls in 2015 found that up to 68% of persons responding support “death with dignity” when a person is terminally ill and in pain.)

A posthumous family post at the end of Ethan’s blog describes a peaceful and intimate end which Ethan chose to have for himself.  We are the recipients of a great gift in this blog – one filled with  insight and care for others. It is a moving display of honesty and courage.

Reading this blog enables you to understand more deeply what a friend or loved might go through when they have treatments with debilitating side effects, and (2) it affords you the opportunity to consider what you would do if you were in Ethan’s situation.

Ask yourself how hard would you fight to “beat” a cancer diagnosed as terminal? Would you opt for experimental treatments? What about costly uncovered treatments? Do you have concerns about how your family would deal with you being ill? Would they be able to cope with the care you needed? How would you know when the rigors of chemotherapy were no longer worth the discomfort?

After you’ve thought about these questions, talk to someone who loves you so they will know what you want.  It’s all about the conversation.  If you don’t have it, no one will know what you want.

How Doctors Die is Different. What’s going on here?

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.

USE OF VENTILATORS: ALIVE BUT AT WHAT COST TO QUALITY OF LIFE?

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.

 

Coded Talk About Assisted Suicide Can Leave Families Confused

In late May 2015, there was a brief four minute piece on All things Considered  which is informative. It points out that doctors may speak in code to a medical proxy or family member about actions which might be taken if the patient in question is very sick and not likely to survive. The “code” in this case was related to accepting extra morphine to give to a dying patient. Whether the doctor was alluding to unanticipated pain which might occur or to the potential for aiding the dying process is not clear which testifies to the possibly coded nature of the communication.

This may be relevant to you. You need to tell your family, your proxy, and your physician what you would want if you were gravely ill and likely to die. In addition, you may need to be very clear about your wishes as well the laws about assisted suicide in your state.  Currently it is a crime  in most states to assist in a suicide.  Penalties can be severe.

You should also be aware that once morphine is administered to someone who is likely to not live long, they may slip into a “morphine haze” and be less able to sustain a conversation.  As a result it is important for significant persons to have a chance to converse before the morphine has begun to have it’s impact.

A very prominent case in 2014 was featured on CNN and  involved the accusation that a nurse and daughter had assisted in the death of her father when she gave him some morphine at his request. While she was cleared, her father died in severe pain and she spent almost a year and $120,000 defending herself from the allegations.

The legal situation is changing rapidly: seventeen states are considering bills to make assisted dying legal and legislation in California,Colorado and the District of Columbia passed 2016. Until it does change, be aware that speaking in “code” may be the nature of communication from compassionate physicians when it comes to helping a seriously ill person leave this world with dignity and relative comfort.

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