Friday, March 3, 2017

The Caring Warmth of Family and Friends

Losses are everywhere. The older you get the losses increase.
First you start to lose your physical abilities, then maybe mental abilities too, eventually your life.
The hardest loss being the loss of your friends and family.
Until a close family member dies, the full impact is not quite appreciated.

How does one cope with such severe losses? I found the answer in the loving arms and presence of my family and friends when I travelled home to Pakistan for my sister's funeral. It was oh so good to have been in the company of so many of them.
We sat together, prayed, ate, cried and laughed as we reminisced of the good life and the good death.

I was also reminded of how hard it was for me when my parents passed away and I could not go to the funeral because of logistical reasons. I was not at peace until I visited with the family 40 days later at the "chaleswan"( the 40th) and got the chance to be with everyone and reminisce.

Relationships are everything. Every day we need to endeavor and build new ones while we strengthen the old so that we are surrounded by a wide, strong circle of caring people who will be there in our hour of need.

I wish you all a big embracing circle of caring friends and family.!

Peace!

Another Sad Reminder of the Fragility of Life

Six feet under - still so hard to comprehend
There are six of us , rather there were six of us brothers and sisters, three of each. All in mid sixties to eighty years old. It seemed like we would go on for a long long time until reality struck and you were reminded how fragile our existence really is!

The older sister, who had never ever been in a hospital and was in good health was diagnosed with Ovarian cancer. Within three months she succumbed to the side effects of chemotherapy. She suffered for about a week prior to her death.

Did she have a good death?
Most felt that she did in a way. Although she did have a lot of pain in the last few days, it was short-lived and she did not linger on and on for weeks and months. Unfortunate as it was, family is at peace with the will of God and the eventuality. Solace in the fact that the suffering was short lived.

This has really shaken up the siblings. It reaffirms the adage that there is no time to be wasted. Who knows what tomorrow brings.You have to live for today and in the moment. Grateful for what you have when you have it. Revisit priorities and make time for those since all the time you have is now.

Gotta live while you are living!

Peace ...

Thursday, November 12, 2015

Emotional Irrationality !!

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.

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.



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.


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.

Monday, July 7, 2014

"I never want to lie in a bed of affliction."

Here is a true story that illustrates how some comments made by a family member may help in the end of life medical decisions even when there is no written advance directive or a living will.

Mary (not real name) is 93 years old with mild dementia and heart disease with severe peripheral vascular disease. She is able to converse with her family about what she wants to eat, how she is feeling   and whether she needs pain medicine or not. She does not understand the severity of her problems and is unable to make her own medical decisions and thus the family members are making all the decisions for her. She has mild contractures of her legs and lies in bed most of the time, but is able to get up with help.
Mary is admitted to the hospital with painful foot which has gangrene in two of the toes of her left foot. She also has signs of infection and is being treated with antibiotics. Doctors recommend amputation of the left leg below the knee to get rid of the gangrene and prolong her life. Family is asked to make a decision for her therapy.
Family members next meet with the Palliative Care Team (author included) to discuss options and see what would be the right thing to do for the patient. Mary does not have an advance directive or a living will and family says that they never had any end of life discussions with her. In further talking with them about the kind of life she wanted to lead, they do remember her always saying, "I never want to lie a bed of affliction."
With the help of this comment, the family later was able to decide not to have any surgery which may have given her a longer life but she would be definitely "lying in a bed of affliction".
Instead they opted to enroll her in hospice, keep her comfortable as long as God wished her to be here.
Family was at peace with their decision since they felt it followed her voiced wishes.