WHEN THE ICU CAN LEAVE YOU WORSE OFF.

Let’s start with the obvious:  the ICU saves lives that otherwise would end.  But the impact of this aggressive care can compromise life after release from the ICU.

This segment broadcast in June of 2016 describes the adverse impact of the ICU and speaks of a new diagnostic term Post-Traumatic Intensive Care Syndrome (PICS) describing the lasting emotional and cognitive effects of being in the ICU.

You will be able to see efforts by Vanderbilt University Hospital to help patients who are suffering with PICS.  It’s clear that  the ICU impacts emotional stability may also impair cognition.  But there is less research about whether the impact on cognition is a lasting or a transitory effect of the very heavy medication often used in the ICU.  Two very interesting elements to this video are (1) the statistic that 1/3 get better, 1/3 stay the same, and 1/3 get worse in terms of their psychological functioning and (2) that one of the patients (a physician) said he is absolutely terrified about  ever going back into the ICU.   Note that this patient was in the ICU longer than the three day average.

The ICU is mentioned in Chapter 4 of my book as an important issue to think about because of the implications for your overall welfare.

There is no doubt that the ICU saves lives through the use of high tech equipment, powerful drugs, and highly skilled physicians and nurses.  I know that I’ m repeating myself… yes, the ICU can truly save your life!  And this video says it can come with costs.  Show it to your family and proxy and think about what you want for yourself.  If you have an aging relative, show it to them and ask what they would choose: comfort care or aggressive care?

There are important implications for your advanced medical directives.  Serious conversations need to be initiated about how much treatment is right for you.  Keep in mind that age can play a substantial role in making the best choices.

 

Vegetative states and minimally conscious states and your civil rights

Finns, MD, Joseph “The Civil Rights We Don’t Think About.” New York Times, 8/24/17 Opinion page.  Published also on Sunday in the Review  Section (8/27/17 page 10.

Most advanced medical directives do not invite input into a variety of situations where a person may not be conscious.  The term “persistent vegetative state” which ordinarily suggests no brain activity is not even used in some forms.  This article suggests that it is even  more complicated and that there are marginal states where a person may be “minimally conscious” and able to express him/herself through a small action such as an eye blink.  There are even small indications that the brain can adapt and make repairs.

The article raises many questions about the treatment of these patients and the consideration of their rights to be consulted about their treatment despite limitations in their capacity to respond.

There are many comments responding to this article which may help you think through what choices you would make and whether you would want to anticipate and express your choices in your own directives prior to a medical event.  Consider doing the following.

Given the possibility that this could happen to you, what would you want for treatment?  Would you want to register your choices ahead of time in your directives?  How does your current age figure into your choices?  Are there financial concerns?  Are there concerns as to how your impairment would impact your family and those you love?  Share this article with your family.  Ask what they would want for themselves.  Then discuss your thoughts and choices.

Jessica Zitter, MD is featured in a compelling Oscar nominated documentary about difficult decisions.

Extremis, released in September 2016 is available to be streamed from Netflix.

This film is about the effort to make treatment decisions for patients who are gravely or terminally ill.  Dr. Zitter and others struggle to determine what a patient wants and then help the family make their best decision.  It is an elegant display of a caring physician and other health care providers attempting to do their best while knowing that providing more interventions can extend life but enhance suffering.

A review of this film in the Journal of the American Medical Association  (Jan 17, 2017 volume 317, number 3) states the following: “… many Americans will encounter end of life decision making – not as an active choice but, passively, with little or no opportunity to influence the decision or the outcome.” (pg 241).  This statement makes it clear that very sick patients can lose their voice in their health care.

Extremis is a stark and deeply moving testimony to the importance of deciding what you want and “having the conversation” with your family, doctor, and health care agent (Medical Proxy).  It illustrates the difficulty of making choices when there have not been adequate conversations and when there is an urgency to make decisions.

Dr. Zitter has also written a memoir Extreme Measures – Finding a Better Path to the End of Life which is to be published in February of 2017.  (Penguin)

Much of this film focuses on two patients who end up with different decisions with regard to breathing machines.  After viewing, try to decide what your choices would be if you were either of these patients.  Then show the film to your loved ones and proxy and have a conversation.  Begin by asking them what they would choose if they were one of these patients, followed by sharing your choices.

Take note of the ICU setting in which this drama plays out.  These units provide the most aggressive highest level of care that may: (1) save your life, (2) extend it without any improvement in the quality, (3) extend it and permanently decrease the quality of your life, or (4) possibly  result in your death.  What would you choose? 

 

 

YOUR LIFE, YOUR DEATH, YOUR CHOICE AN E-BOOK PUBLISHED EARLY OCTOBER 2016

YOUR LIFE, YOUR DEATH, YOUR CHOICE  How to Have Your Voice to the End of Your Life – is an e-book based on six years of research and teaching  providing you with the necessary resources for considering your end of life options.  It is…

  • WRITTEN FOR ADULTS OF ALL AGE
  • PROVIDES OPTIONS AND GUIDANCE  FOR CHOOSING YOUR MEDICAL PROXY AND ADVANCED MEDICAL  DIRECTIVES
  • ENCOURAGES REFLECTION , CHOICE MAKING AND CONVERSATION
  • GIVES DIRECT INFORMATION ABOUT THE  IMPLICATIONS OF YOUR CHOICES
  • USES MANY REAL EXAMPLES
  • ENABLES  INTERACTION WITH OVER 65 WEB SITES THROUGH LINKS TO VIDEOS,  POD CASTS AND ARTICLES             
  • SUGGESTS TOOLS AND STRATEGIES  TO “HAVE THE CONVERSATION” WITH FAMILY, DOCTOR, AND HEALTH CARE AGENT
  • ADDRESSES DEMENTIA AND MEDICAL DIRECTIVES
  • INCLUDES FORMS TO VIEW, DOWNLOAD AND PRINT

If you have an older adult who is not computer literate, buy it and read the book with her/him.  If you are younger, buy it for yourself.  As you will see when you read some of the examples, accidents and illness can strike at any time.

The book is available in a variety of formats for different kinds of tablets and computers.  CLICK HERE TO BUY THE BOOK .

NOTE: If  you choose to read it on a computer you must download ebook reader software.  I am using ‘Ice Cream” and it works well.  Type into your search engine “e-book readers” and select and download the one that appeals and matches your computer (Apple or PC).

And please offer your thoughts on this website about your reading, reflection, and conversations with those who are important to you.

Gray areas and the eventual cost of dementia care. It’s substantially more than for heart disease or cancer.

Gray areas…

In our “Having Your Voice” class, we talk about gray areas…the time when we begin to lose the ability to make effective decisions.

Anyone living long enough will experience this to some degree but, for some, it is the beginning of a more serious, substantial, and accelerated decline into dementia. It is important to appreciate that Alzheimer’s is not the only form of dementia… there are others that are equally devastating.

Gina Kolata’s article from the New York Times on October 26, 2015 states that the cost for treatment of heart disease and cancer for the last five years of life is roughly $175,000 while the cost for dementia care is $285,000.   The cost difference is due to the hands-on care required for caring for someone with dementia.

If you want to learn more about the impact on family, read “A Life Worth Ending”, a compelling article by Michael Wolff whose mother had dementia. He beautifully describes the woman she was, the last tragic years of her life, and the impact on the family.

What are the options for someone who develops dementia?
1. Having financial means helps because there are resources to support the person.
2. Having long term care insurance is valuable in gaining assistance.   However, it is expensive and usually has to be purchased when you are young and don’t need it. (Wolff comments darkly about the ongoing struggles to gain payment for services for which he asserts his mother is entitled).

While I am not advocating suicide, two well written articles address the decisions that were made by two women who were diagnosed with early onset Alzheimer’s disease. Both women recognized the loss of dignity and the many burdens they would place on others as their disease progressed. They made a different choice.

Gilean Bennet, a former professor and psychotherapist who lived in western Canada, wrote a farewell that described her reasoning and decision to take medicine to end her life. It includes comments about the needless expenditure of resources when there was little that would bring her a satisfying quality of life.

Robin Henig wrote about a professor of psychology who carefully researched how to take her life after she was diagnosed with early onset Alzheimer’s disease.  Although she didn’t want to take her life, she knew that she would get to the place where she couldn’t because of the impairment of her disease. Henig describes how her impairment almost defeated her intention.

In the realm of Hollywood films, “Still Alice” beautifully depicts the dilemma faced by a professor diagnosed with early onset dementia. It depicts Alice’s failing in an attempt to take her life because she was too impaired to complete the act of taking pills. Clearly, in patients with dementia, the window of opportunity to take their own life closes at some point.

QUESTIONS FOR YOU
As always, there are profound and difficult questions for you to ponder. Here is a brief sample:
1. What would you do if you were diagnosed with a progressive incurable form of dementia?
2. How much medical care would you want to sustain your life (such as for blood pressure, cholesterol, heart medication)?
3. Are there family members you could identify who would be willing to care for you?
4. Do you or they have the resources (financial, personal, spiritual, etc.) to care for you?
5. Would you consider taking your life if you were able to do it?

Share your responses to these questions with your family. It’s an important conversation to have.

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.

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.

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