We have been advised all our lives not to make any major decisions when we are not in a calm emotional state. if you are angry or upset, it is not a good time to go out shopping for a major item, a car, a house etc. Because in this state of emotional upheaval we are not likely to make good rational decisions. We are in a state of emotional irrationality.
As healthcare workers we see this phenomenon often with families of terminal patients. No wonder they have a hard time coming to grips with the reality and making what everyone else would see as rational , reasonable decisions. Because they are in a state of emotional irrationality!!
Our responsibility as physicians now becomes to help them see reason, give them time, give them reasons as to why a certain choice is right. Help them see the impact that emotion is playing. Guide them gently to a rational decision so they ultimately are comfortable with their choice.
You will need patience, caring and compassion to carry this out.
We all can be in this emotional place just as easily one day.
Thursday, November 12, 2015
Sunday, August 30, 2015
The Conundrum of Alzheimer's and other Dementias
People want to live and die on their own terms. We all wish to have control on our lives. When we think of death, it is the dying which is what most worry about . Of special concern is when we lose the capacity to make decisions and with time lose the capacity to understand what is going on as happens with Alzheimer's and other dementia of multiple causes.
This is a chronic illness of slow decline with an average life span of about 7 to 10 years. Some of course may last less and some more years. Initially the loss of function and understanding is mild , perhaps forgetting names and places. But it progresses to inability to drive, then to simple tasks, losing ones way , becoming very forgetful and eventually not recognizing family, difficulty in eating, swallowing, walking and becoming totally dependent on others.
Concern most patients have is that they do not wish to live with help of artificial means beyond the level they feel worthwhile.
Again, if families do not know their wishes then they are left with the uncompromising situation of making hard decisions. Thus it behooves us all to let our loved ones know of our wishes and what may be important to us in case we get dementia.
You may consider a wording similar to what I am suggesting here below to be added to your advance directives as your wishes in case of dementia:
"If my mental abilities have declined to a point whereby I am unable to communicate rationally ( or none at all), unable to recognize my loved ones, unable to swallow food or water safely ( or none at all), unable to care for myself AND it is unlikely that my condition will improve, then I wish all life prolonging treatments to be stopped (medicines, machines, pacemakers, artificial food and water etc.) and nature be allowed to take it's course.
BUT please continue any treatments necessary for my comfort so that I may not suffer."
This is obviously a very severe end stage dementia but you may wish to change the function level to any other as you wish.
Once you have it in writing or have at least talked with your family and physician about it, you have taken appropriate steps to control your destiny as well as possible.
This is a chronic illness of slow decline with an average life span of about 7 to 10 years. Some of course may last less and some more years. Initially the loss of function and understanding is mild , perhaps forgetting names and places. But it progresses to inability to drive, then to simple tasks, losing ones way , becoming very forgetful and eventually not recognizing family, difficulty in eating, swallowing, walking and becoming totally dependent on others.
Concern most patients have is that they do not wish to live with help of artificial means beyond the level they feel worthwhile.
Again, if families do not know their wishes then they are left with the uncompromising situation of making hard decisions. Thus it behooves us all to let our loved ones know of our wishes and what may be important to us in case we get dementia.
You may consider a wording similar to what I am suggesting here below to be added to your advance directives as your wishes in case of dementia:
"If my mental abilities have declined to a point whereby I am unable to communicate rationally ( or none at all), unable to recognize my loved ones, unable to swallow food or water safely ( or none at all), unable to care for myself AND it is unlikely that my condition will improve, then I wish all life prolonging treatments to be stopped (medicines, machines, pacemakers, artificial food and water etc.) and nature be allowed to take it's course.
BUT please continue any treatments necessary for my comfort so that I may not suffer."
This is obviously a very severe end stage dementia but you may wish to change the function level to any other as you wish.
Once you have it in writing or have at least talked with your family and physician about it, you have taken appropriate steps to control your destiny as well as possible.
Thursday, July 16, 2015
CHATAUQUA TALKS # 1…"Courageous Conversations on Death and Dying -The Time is Now"
I am at the Chautauqua Institute in Chautauqua NY for three weeks now. It is a wondrous place we frequent every year!
This year with the help of the Department of Religion I have been able to schedule weekly talks on end of life issues, mainly talking about advance care planning and the courageous conversations we need to have with our families, the three questions, as already described in this blog earlier.
The response has been overwhelming. I was expecting maybe 20 people initially but close to 100 showed up. Every week now we have 140 or more attendees.
Even though a fair number (70-80% or so) of the attendees have living wills or advance directives, there was an extremely positive response to the value added by the three questions which define your minimum acceptable levels for supporting life by artificial means, be it medicines or machines or artificial hydration and nutrition via IVs or tubes.
There is still a lot of confusion over CPR, DNR, Healthcare Agent (POA) and their ability to make independent decisions.
There is also a lot of interest in euthanasia and physician assisted suicide.
Many people voiced their concern over management of dementia in family members and were worried about what to do for themselves if they also suffered from the same in the future. They found that at least in setting the advance care plan, they had some control over their lives which was very reassuring to them.
This experience of teaching large numbers of lay people in the essentials of conversations and seeing their reaction and evaluations reaffirms my belief that one of the simplest and most important conversations is to address the three questions - as already covered in this blog on earlier dates.
If everyone in the US did this, end of life decisions would be much, much easier and the cost of healthcare even will go down by not doing unnecessary, futile treatments.
It has been a most gratifying experience both professionally and personally, and I wish to thank Maureen Rovegno at the Department of Religion for the opportunity, my wife Jean for her support and help with this endeavor and God for Chautauqua Institute!!
If you have never been here, it is time you came.
At least go visit it on ciweb.org.
This year with the help of the Department of Religion I have been able to schedule weekly talks on end of life issues, mainly talking about advance care planning and the courageous conversations we need to have with our families, the three questions, as already described in this blog earlier.
The response has been overwhelming. I was expecting maybe 20 people initially but close to 100 showed up. Every week now we have 140 or more attendees.
Even though a fair number (70-80% or so) of the attendees have living wills or advance directives, there was an extremely positive response to the value added by the three questions which define your minimum acceptable levels for supporting life by artificial means, be it medicines or machines or artificial hydration and nutrition via IVs or tubes.
There is still a lot of confusion over CPR, DNR, Healthcare Agent (POA) and their ability to make independent decisions.
There is also a lot of interest in euthanasia and physician assisted suicide.
Many people voiced their concern over management of dementia in family members and were worried about what to do for themselves if they also suffered from the same in the future. They found that at least in setting the advance care plan, they had some control over their lives which was very reassuring to them.
This experience of teaching large numbers of lay people in the essentials of conversations and seeing their reaction and evaluations reaffirms my belief that one of the simplest and most important conversations is to address the three questions - as already covered in this blog on earlier dates.
If everyone in the US did this, end of life decisions would be much, much easier and the cost of healthcare even will go down by not doing unnecessary, futile treatments.
It has been a most gratifying experience both professionally and personally, and I wish to thank Maureen Rovegno at the Department of Religion for the opportunity, my wife Jean for her support and help with this endeavor and God for Chautauqua Institute!!
If you have never been here, it is time you came.
At least go visit it on ciweb.org.
Sunday, May 24, 2015
Take the Load off the patient and family
Nothing is more difficult than deciding on stopping or refusing life sustaining treatments. It is even more difficult and almost impossible for many a family members because of the emotional connections. Just as a father once said to me, "I would not want to be like this but she is my daughter. How can I make this decision which may end her life?"
I would like to share the story of Sally ( not her real name) where we were able to take the load of decision-making off her and the family's shoulders to obtain a good result.
Sally, age 62, was very sick with end stage liver disease with fluid accumulation all over, severe jaundice with heart failure and breathing problems. Now, she was totally bed bound and barely able to eat but mentally quite alert and making her decisions. Her prognosis was very poor and she was hospice appropriate with life expectancy of less than 6 months. her quality of life was very poor. She could communicate but barely smiled. If she were to arrest and be resuscitated, she probably would not respond and at best be on a vent and clinically at a worse level than now. Doctors felt that a "Do Not Resuscitate " order in case of an arrest would be the right thing to do.
I was asked to consult. I agreed with her physicians and talked to the patient about the reasons why a DNR might make sense and for her to give it some thought. She understood and wanted to think about it. Family was involved in the discussion and privately seemed to support the notion. The next day, the patient seemed quieter and voiced that this was a hard decision. At this point, I decided to take the load off her shoulders and suggested that I work with her family and help them decide what is best for her, knowing they had her best interest at heart. Her face relaxed and she quickly agreed. Thus, we took load off of her shoulders.
Now, working with the family, we told them that these choices are medical decisions. In such cases, there are treatments and procedures that are of no benefit to the patient. In other words, they do not help us get to the goals we want to achieve, namely to get her better. Instead, we would be prolonging the dying process and increasing pain and suffering, not just for her, but for all concerned. The family needed to look at this a medical decision, understand the reasons and not feel that this is only their decision. The family did not object. Thus we were able to take the load off family's shoulders too by making this a medical decision. All they had to do was show their understanding. In addition to the do not resuscitate/ allow natural death order, family and patient agreed to a hospice consult.
Our job as palliative care physicians and teams is to help patient and families make difficult decisions. We help them understand why their decisions makes sense so that in the end they can be at peace with their decisions knowing they did what was best for their loved one even though it was very hard.
I would like to share the story of Sally ( not her real name) where we were able to take the load of decision-making off her and the family's shoulders to obtain a good result.
Sally, age 62, was very sick with end stage liver disease with fluid accumulation all over, severe jaundice with heart failure and breathing problems. Now, she was totally bed bound and barely able to eat but mentally quite alert and making her decisions. Her prognosis was very poor and she was hospice appropriate with life expectancy of less than 6 months. her quality of life was very poor. She could communicate but barely smiled. If she were to arrest and be resuscitated, she probably would not respond and at best be on a vent and clinically at a worse level than now. Doctors felt that a "Do Not Resuscitate " order in case of an arrest would be the right thing to do.
I was asked to consult. I agreed with her physicians and talked to the patient about the reasons why a DNR might make sense and for her to give it some thought. She understood and wanted to think about it. Family was involved in the discussion and privately seemed to support the notion. The next day, the patient seemed quieter and voiced that this was a hard decision. At this point, I decided to take the load off her shoulders and suggested that I work with her family and help them decide what is best for her, knowing they had her best interest at heart. Her face relaxed and she quickly agreed. Thus, we took load off of her shoulders.
Now, working with the family, we told them that these choices are medical decisions. In such cases, there are treatments and procedures that are of no benefit to the patient. In other words, they do not help us get to the goals we want to achieve, namely to get her better. Instead, we would be prolonging the dying process and increasing pain and suffering, not just for her, but for all concerned. The family needed to look at this a medical decision, understand the reasons and not feel that this is only their decision. The family did not object. Thus we were able to take the load off family's shoulders too by making this a medical decision. All they had to do was show their understanding. In addition to the do not resuscitate/ allow natural death order, family and patient agreed to a hospice consult.
Our job as palliative care physicians and teams is to help patient and families make difficult decisions. We help them understand why their decisions makes sense so that in the end they can be at peace with their decisions knowing they did what was best for their loved one even though it was very hard.
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