A TRUE STORY ABOUT DETAIL IN DIRECTIVES AND HOW A FAMILY COPED

A healthy active woman in her early 70’s had a massive stroke while living alone.  At the point of discovery several hours later, she was placed on a ventilator and taken to a major hospital.  Brain surgery was performed which enabled her to be somewhat responsive by using hand squeezes.  (Having a ventilator does not allow you to speak.)

When her family located the woman’s advanced medical directive, they were deemed too vague to respond to the complexities of her situation.  Would she have elected to remain indefinitely on the ventilator or would she have chosen otherwise?  They didn’t know.

After consultation with doctors, the family attempted communication including telling her the neurologists opinions and the likelihood of her recovery.  Through the use of hand signals it was determined that the woman asked to be removed from the ventilator and refused further aggressive care. Her wishes were respected and she died within 24 hours with her family present.

Unfortunately, this situation is not uncommon.  Although forms were completed, they lacked specificity with the end result being to put the proxy and family in a state of uncertainty.  Often forms are simply a series of check marks and thus do not take into account the complexities that can arise in a life threatening situation.  Additionally, forms are often completed with little or no conversation with proxy or family members who in a medical crisis such as this one are often unable to act in accordance with what one may have wanted.

Here are some important positive elements.

  • The family was together

  • The patient was consulted throughout

  • The patient was able to make her choice

  • The hospital and doctors respected her choices

  • The patient passed on her terms.

Here are some thoughts for reflection and some suggestions for action:

  1. Reflect on what you would choose if you were the patient.

  2. Review your forms to see if they contain enough detail

  3. Give thought to probabilities: what would you choose if you had 10% chance of living off a respirator? Or a 60%chance of being bedridden?  Or a 40% chance of living on your own after you recovered?

  4. Share this story with your medical proxy, family, and doctor and ask them what they would do in a similar situation and then share your choice. Have a conversation!

  5. Write down your thoughts/decisions and put them into your Advanced Medical Directives.

SHARE YOUR OWN STORY HERE.

DEMENTIA IS AHEAD FOR MANY PEOPLE ARE YOU PREPARED?

Medical science has greatly enhanced the life span.  This increased longevity means that you must carefully reflect on what how much treatment you want as you age.  Research is revealing that living longer increases the chance of developing dementia, for which there is no cure.  It is an illness that can strip you of your dignity, consume your family’s caretaking capacity, and exhaust your financial resources.  Many elements of dementia care are not covered by Medicare.

The following three articles will help you understand the complexity of the dementia issue.

In 2015 Paula Span, a well-known journalist, described a man who adapted his Advanced Medical Directives to explicitly state that he did not want to be fed if he could no longer feed himself.  Span’s article preceded by two years a troubling situation in Oregon that featured a woman in a nursing home with advanced dementia whom her husband claimed was being fed against her stated medical directives. When her husband filed suit against the nursing home, the court ruled that because she opened her mouth when a spoon was put up to it “she wanted to eat”.  It was not viewed as a purely reflexive response.

On January 19, 2018, Span published another article describing the efforts to improve the clarity of dementia directives through the use of forms designating what you would want under mild, moderate, or advanced states of dementia. You can view, download and print the five page document which includes three forms addressing each level of dementia.

This directive is limited in two respects:  (1) the choices of treatment are more limited and (2) the implications of choices are not addressed. For more detail, I refer you to the Chapters 3 and 4 in my e-book YOUR LIFE, YOUR DEATH, YOUR CHOICE to understand the implications of twelve choices for treatment.  Chapter 5 provides information on the 3 levels of dementia with only one form to complete.  You can view and compare my dementia directive, “Situation E” which includes 12 choices (including feeding) by clicking here.

We are a very long way from a solution to this issue.  In the meantime, it is important to take the necessary steps of deciding how much treatment you want, having important conversations about your choices with your family, doctor, and health care proxy AND completing one of the forms to ensure that your choices are honored.

HERE ARE A FEW QUESTIONS FOR YOU:

HAVE YOU EXPERIENCED DEMENTIA WITH A RELATIVE?  WHAT DID YOU SEE OR EXPERIENCE?  

ARE YOU AWARE OF DEMENTIA AS SOMETHING THAT MIGHT BE INHERITED IN YOUR FAMILY?

HOW MUCH TREATMENT WOULD YOU WANT?  DO YOU HAVE THE RESOURCES FOR THAT TREATMENT?  HAVE YOU CONSIDERED WHETHER YOU WOULD TRY TO FIND OUT IF YOU HAD DEMENTIA BY DNA TESTING?

HAVE YOU COMPLETED ANY ADVANCED MEDICAL DIRECTIVES?  IF NOT, WOULD YOU CONSIDER DOING IT AND INCLUDING A DEMENTIA FOCUSED DIRECTIVE/

HAVE YOU HAD CONVERSATIONS WITH THOSE IMPORTANT TO YOU ABOUT WHAT YOU WOULD WANT?

 

 

DEMENTIA AND DEATH WITH DIGNITY LITTLE PROGRESS.

Paula Span is an incredible journalist who often offers observations which are cutting edge.  In 2015 she wrote about the need for clear and detailed statements about your choices for end of life care if you are suffering from dementia.  In particular  the individual she was featuring had taken pains to detail that feeding and hydration should be terminated.  He simply didn’t want his life to continue in a severely compromised state with little or no dignity left.

It was prescient.  In August of 2017 an article was published (not by Span) which described how the State of Oregon had ordered the feeding of a woman with advanced dementia despite what her advanced directives said.  The reasoning was that she had “not provided adequate detail” in her directives and because she opened her mouth when a spoon was brought to it, she “wanted to eat and to live”.

The husband (her proxy) filed suit against the nursing home and the court ruled against him.   So she remains in a nursing home (at $85,000/ year) being fed by hand.  Keep in mind that Oregon is the State with the longest and most progressive attitude towards death with dignity.

As a good adjunct to detailed instructions in the event that someone is develops dementia, it is also worthwhile to video tape the signing of the directives and to have the person state what their wishes are if they become unable to recognize or interact with others.  You can do this with your smart phone but be sure to save it to a flash drive.

As the situation above illustrates, it may make no difference.

HOSPICE IS GOOD RESOURCE, BUT IT ISN’T ALWAYS GOOD… BEWARE AND DO YOUR RESEARCH

“This Was Not the Good Death We Were Promised.” NY Times Op Ed, January 6, 2018

This is a story about one hospice in one community at a particular point in time.

All Hospice organizations are different and have different cultures.  While they ostensibly do the same thing;  provide care for those at the end of their life, they have different cultures and go through all of the stresses and strains of any organization.  For example, I recently learned of a situation where two parents went into the same Hospice within a year of each other and the first experience was very positive while the second was not.   It is to the credit of the Hospice organization that they scheduled a meeting to learn how they had not met the expectations of the family and were determined to correct the problems.

One distinction that may be important to consider is whether the organization is a nonprofit entity.  It is logical that a “for profit” entity has more of an eye on how to keep costs down.  Click here to read the story.

Talk with your family about whether you want Hospice as a resource when your life is coming to an end.  As friends who might have had a relative what their experience with Hospice was like.  Did you know that Hospice patients generally live longer with less pain and discomfort than a similar group?  Unfortunately, when many hear that someone has gone into Hospice they consider it a death sentence.  It is not.  It is a decision to live for as long as they can with the greatest humanity and comfort that can be provided.  Too many families and patients wait too long to contact Hospice.  HAVE A CONVERSATION ABOUT HOSPICE WHILE YOU ARE WELL AND LET YOUR FAMILY KNOW WHETHER YOU WOULD WANT HOSPICE.

GREAT VIDEO ABOUT AGING, MAKING ADVANCED MEDICAL DIRECTIVES, AND OVER TREATMENT

Video  End of Life – Aging Matters NPT report.

This 59 minute video produced by Tennessee Public Television presents the issue of aging and the associated increasing need for medical services.  It is a comprehensive look at the issues that are present for so many and articulates well the many “systemic problems” that plague our current health care system.  It comments on the many failures of the health care system because of its orientation and its economics.  It is also disturbing to see repeated statements by patients or family members who didn’t feel that they were asked what they wanted, given choices, or told what they could expect with regard to their health issues.

This is an important video for seniors and especially for their children or other relatives to watch and discuss so everyone can all be “on the same page” when decisions have to be made.  As one physician comments, when the patient is in the Intensive Care Unit is not the time to be start having important conversations. The same statement has been made by Emergency Room doctors.  CLICK HERE TO WATCH.

If you have children or relatives who you would like to start conversations with about your choices, send them the link and invite them to be in touch to discuss their reactions.  Or better yet, watch it with them and stop and talk about things that particularly impact you during the viewing.  This is how you will get to know each other’s views.  START THE CONVERSATION!

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.

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