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.
“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.
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!
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.
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 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.