Colleen Chierici, published an article entitled, “The Cost of Not Talking About Death to Dying Patients”. The Hill October 8, 2017
The author is a nurse. Most medical personnel have substantially more insight and knowledge than most of us about medicine, hospitals, treatment, and mortality. But she had trouble talking with her dying mother.
Her article is one of the best descriptions of a particular challenge for those of us who will be confronted with an incurable illness. It’s not the only challenge because there are many different kinds of medical situations which confront us. Here are a few of the elements addressed in this article
In retrospect, Colleen’s mother died a terrible death because no one (including the author!) talked with her about the fact that she was dying from cancer. Instead, they tried to treat her.
Many (but not all) doctors and nurses are either ill prepared or unwilling to “have the conversation”… or both.
She admits that it was difficult for her to raise the issue with her own mother. It’s not unusual, but it has consequences for both the patient and their family.
There is a need to go far beyond the dying patient featured in this opinion. Everyone needs to make their choices known. You can do this only if you (1)inform yourself, (2) reflect on what is most important to you, and (3) have deep conversations with those who are important to you… not just once, but frequently.
The author is a cardiologist who describes in the New York Times on 7/30/18 the complicated dilemma he faces when discussing a heart problem called fibrillation… a condition that causes the heart to beat erratically and ineffectively. In a patient with this condition, s/he can die suddenly and quickly without a “defibrillator”. Electronic ones can be implanted to shock the heart back into a regular beat. But the downside of an implanted defibrillator is that as a patient’s heart continues to decrease in effectiveness, they are likely to die a much more prolonged and unpleasant final ending. In this article, you can see that both patients and the doctor have difficulty coping with this dilemma.
It is worth it to attempt to think about what you would choose if you were confronted with this unfortunate choice. It starkly raises the question of quality of life over quantity. Have a conversation with your family and proxy about this dilemma. Maybe you can all profit from this discussion.
Dr. Zitter is interviewed by Amy Tobin, CEO of an organization which focuses on new ideas in Berkeley. This podcast is about the importance of considering your choices long before being admitted to the hospital with a serious illness or injury. She is a specialist in intensive care, pulmonary diseases, and palliative care. The title of the episode is: DEATH 101.
Zitter is the author of Extreme Measures a book about her work as a physician with patients who are very sick and often dying. Her argument is that we spend too much time denying death and too little accepting the inevitability of it. The result is often catastrophic suffering caused by avoidance of important conversations which should be started when a child is 18 (or earlier) and revisited throughout life.
Zitter is also featured in a 20 minute Netflix film, Extremis, which was nominated for an Academy Award in 2016 for “best short documentary”. It is worth watching.
Episode 27 (2/21/18) is 41 minutes long.
After listening to this podcast, share your impressions with your friends and loved ones. Tell them what you want in the way of aggressive treatment if you are not able make choices for yourself. Everyone is different and when a medical crisis occurs, they will have a better idea of what you want and can help you.
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:
Reflect on what you would choose if you were the patient.
Review your forms to see if they contain enough detail
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?
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!
Write down your thoughts/decisions and put them into your Advanced Medical Directives.
SHARE YOUR OWN STORY HERE.
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?