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!

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