A Psychiatrist’s Opinion: Dying well is Dying at home.

In a short article, Dr. Allen Frances, a psychiatrist, makes the case for the home being a more desirable place to die   He states that, “…there is no worse death than a hospital death”.   He emphasizes the unpleasantness of the ICU given the noise, light, strangers, unfamiliar physicians, etc.   Ken Murray, MD who has written extensively about how doctors die, has observed that they are less likely to choose to die in hospitals than the general population.

But dying at home is not always a choice.  Sometimes family or care givers are not capable of providing the care needed to prevent hospitalization.  Quite possibly the medical needs of the patient are too complex or the patient doesn’t want to subject the family to the burden of care.

If you could choose where you spent your last days and hours, where would you want to be?  When making your choice it is important to discuss your wishes with your proxy, doctor, and loved ones.

Insights in to Death with Dignity: Brittany Maynard’s choice and her husbands experience with her choice.

On October 15, 2015, Compassion and Choices posted two videos to honor Brittany Maynard, a 29 year old woman diagnosed with terminal brain cancer who took her life on November 2, 2014 through the Oregon Death with Dignity law. In the first video, Maynard talks about her decision and why she was choosing to die.  Prior to her death, she tirelessly advocated for a death with dignity law for California that passed in the legislature in September 2015. Governor Brown signed the law on October 5th, 2015.  The 6 minute video  includes information about the efforts of Compassion and Choices in helping the passage.

In a second five minute video you can watch  Oprah Winfrey interviewing Maynard’s husband.  He describes Maynard’s last hours of life as being peaceful, loving, and filled with dignity. The video is a rare opportunity to have a window on one of the most intimate moments in life.

Given that we are all going to die, what end would you choose for yourself?  Would you want to die in a hospital or medical facility or to die at home?  What’s most important for you?

How to do you feel about the growing movement of assisted suicide?  If you support assisted suicide, assisted dying, or death with dignity, contact your state legislators.

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.

• 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.


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.

How much treatment for the older citizen confronted with a difficult illness?

Recently, a very dear 88 year old friend, whom I have known for 50 years, was diagnosed with cancer near his pancreas.  One option was to do nothing that would likely result in his death.  The second option, was a radical invasive surgery called “the Whipple Procedure” that required an eight hour operation.  On the web I read that the survival rate for this procedure was 25% for 5 years.

My friend was a healthy, lively, and creative man whom I cared for dearly.  When given the choice, he elected for surgery, in part, because he was curious to see what would happen and how he would do.  Obviously, he had an adventuresome spirit and often spoke with an awe about life.

I was pleased for him and his choice and hoped he would have a good recovery.  Unfortunately, it was not good and he died 14 months later after struggling with the many side effects of the surgery and a return of the cancer.

Although I supported my friend’s choice, I’m not sure that I would have taken that 25% risk.  The many side effects from surgery can be hard on our aging bodies and we don’t heal as quickly.  Complications such as strokes, infections, difficulty with digesting food, multiple medications can make life pretty miserable.  Instead of surgery I might choose Hospice with palliative care and make the most of the opportunity to spend time with my family and friends.  My choice rests on my desire to have death with dignity on my terms.

Hospice patients tend to live 25% longer, have a more pleasant end, and cost less in every way.  Families report that while there is grief (as there should be), it is not as deep or infused with complicated feelings about treatment choices.

Examples such as my friend’s help us decide what we would do in a similar situation.  Making a choice is good for us to do now while we have the capacity to make decisions for ourselves.   It also enables us to make our family aware of what we would want in case the decision is suddenly and unexpectedly thrust upon them to make in our behalf.  It can be as simple as saying, “Remember when Uncle John had that medical problem?  Here’s what I would want to happen if it were me.”.  If you engage in this conversation repeatedly, you inform your family and loved ones as to what you would choose.

And don’t forget:  you can always change your mind…no one needs to hold you to what you said.  Who knows – when I get to 88 maybe I’ll decide that the Whipple Procedure doesn’t look so bad.


Death with Dignity for those with Alzheimer’s Disease: Difficult Choices

In the May 17, 2015 NY Times Magazine, Robin Henig chronicles the experience of a 60 year old Cornell psychology professor diagnosed with Alzheimer’s disease who decides to take her life rather than live on in a demented and helpless state. The most challenging aspects of the decision is WHEN she will do it. How long can she wait while retaining her capacity to actually take the actions she wants?  It is a provocative and compelling article which we all should consider for ourselvesThis issue is well demonstrated in the movie “Still Alice” released in 2014.   Alice is a professor of linguistics, who wants to take her life but loses the capacity to take her life by waiting too long.

Here are just a few questions: Would you have the courage to take your life? Are their religious or spiritual issues for you? Will your family or loved ones accept your decision? Can you really say “good bye” to life? Is this a better end than one that drags on consuming the resources, (emotional, loving and financial) of your family? Or is it a gift to them to allow them to care for you?

You may also want to read a beautifully written essay posted in 2014 by Gillian Bennett a philosopher and psychotherapist who also was faced with increasing dementia and eplained the reasons for her decision to take her life. It is based on many factors which contributed to her decision including not wanting to be a drain on both personal and governmental resources.  In Bennet’s case, she is clearly seeing a progression towards greater impairment. She is compelled by this awareness to act before she does not have the capacity to do so.  And she does.

In YOUR LIFE, YOUR DEATH, YOUR CHOICE: Having Your Voice to the End of Your Life, dementia is understood as a series of gray areas…the time when we begin to lose our capacity to think, remember, reason, etc. The darker the gray, the more dementia is clouding our ability to think and interact.  Forms have been developed which allow individuals to declare their wishes while completely capable of making decisions for themselves.

Another beautifully written essay by Michael Wolff is entitled: “A Life Worth Ending. The era of medical miracles has created a new phase of aging, as far from living as it is from dying. A son’s plea to let his mother go“.   He describes the descent of his mother and the power of medicine to sustain the body but not the person. While this essay makes it clear that she would not want to live this way, even more poignant is the profound emotional and economic costs of her long illness on the author and his family.

Would you like the opportunity to have assistance in dying if you no longer were capable of living the kind of life that you wanted? Should the government provide avenues for doing this? Have you talked about this issue with your family?  Given the state of Wolff’s mother, would you want to be kept alive if you were permanently and irrevocably in that state?


Assisted Dying and Death with Dignity?

According to a recent editorial in the New York Times, 17 states and the District of Columbia are considering legislation acknowledging that gravely ill patients who have little or no chance of recovery deserve the right to die with dignity.  Desmond Tutu  wrote forcefully about this in an essay in which he criticized the effort to sustain the life of Nelson Mandela whose body was kept alive long after he had ceased to be conscious. Tutu flatly stated that death with dignity is a civil right.

More recently, Brittany Maynard became prominent when she declared that she intended to take her life rather than succumb to the brain cancer that was progressively causing massive seizures.  Maynad feared that she would not be unable to take her life if she didn’t act quickly.  To accomplish her goal of a dignified death, she was forced to move to Oregon and establish residency in order to qualify for the Aid in Dying program – a program that has numerous safe guards in place to insure that a person is not simply trying to find a way to commit suicide.  With the support of her family, she took her life on November 1st, 2014.

The state legislatures currently considering a Death With Dignity law will encounter stiff opposition from individuals within the medical community as well as from some organized religious groups. Detractors include physicians (Ira Byock, M.D for one) and those whose religious beliefs include the tenant that if  “God gave life, only God can take it away”. But as the population ages and more individuals become afflicted with fatal illnesses, the pressure will increase for ending suffering in a way that is both humane and reasonably regulated.

An interesting aspect of the use of the law in Oregon is that only 60% of those who qualify for the program actually secure and use the physician prescribed medication.  But almost all patients describe great relief at knowing that they have the means to end their life if their suffering  becomes unbearable.

If you were confronted with an incurable and progressive illness which was sure to take your life, would you want to have the option to die with dignity on your terms with the assistance of a  physician?  Or are you supportive of  the government saying that you must live out your natural life despite, pain, discomfort, and a lack of dignity?


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