WORDS MATTER - #1 - "FAILURE" and "BETTER"

It is what we say and how we say it that makes a difference in how we get the message across and how it is perceived by others.
This is really important when we are talking with patients and families dealing with serious illness near the end of life.
The two words I want to tackle today include "better" and "failure".

FAILURE:
Patient and families do not get the severity of the clinical condition until they hear the word failure.
If you say the kidneys are not functioning well and need dialysis, it does not sound as severe as "the kidneys are failing, or patient has kidney failure". In many instances the families that had been reluctant to let go start to see the futility of aggressive treatments in terminal patients once they realize that organs are now "failing". Like the husband of my 64 year old female patient with liver failure who was being treated aggressively with poor response. As I consulted and said to the husband ,"As you know she has liver failure". His response was"I did not know she had liver failure!" ( this is in a patient who is yellow from severe jaundice, bleeding with poor mentation). Nobody had used that word before. Once he heard it, he understood the gravity of the situation and was visibly moved. He was also then able to make more rational decisions.

BETTER:

Anytime we say to the family that their loved one is better, they assume that this means he/she is going to be ok now, will wake up, start talking and walking soon. We may have just meant that blood pressure is now normal, or the oxygenation has improved.
In terminally sick patients this is giving the wrong impression when the overall prognosis is still dismal.
I prefer to say that the blood pressure has improved WITH medication and oxygen levels are higher with the ventilator,  electrolytes have improved with dialysis BUT overall condition and prognosis is still very poor. Chances of reasonable , meaningful recovery is remote. He/she is being artificially supported.
This gives them the true picture and there is no misunderstanding or unrealistic hopes from our misconstrued words.
So, unless there is a good chance the patient is going to be overall better, please avoid that word. It will decrease unnecessary suffering in the loved ones.

In summary use the word failure truthfully and freely.
Use the word better cautiously and with full knowledge.

Thank you for this great work you all do with the severely sick.

Just Published: "Courageous Conversations on Dying - the Gift of Palliative Care"

This is a practical guide for physicians, healthcare providers and all the people they serve. Thus a good book for the physician and the patient alike.

I have been working on this for over a year and a half at least. It is a distillation of my work and knowledge I gained from many mentors, colleagues, students, patients, friends and families.

The time for these conversations on end of life goal-setting is now while we still have the capacity to make our own decisions.
No need to be shy and reticent. One never knows when the time for the tough decisions will come, but come it will.

In this book you will learn how, why when and where to have these important conversations including the words to use, how to be a good listener, how to empathize, how to help others in the decision-making, how to properly document your end of life wishes and much more. It is full of practical tips and case studies from years of experience.

I hope you find it helpful and to your liking.
Peace

Physicians are missing the boat on ACP -Advance Care Planning

ACP/ Advance Care Planning is a part of our responsibility as conscientious physicians.
It is a part of the anticipatory guidance we offer patients just like smoking, drugs, alcohol, diet , weight control, accident prevention, vaccination etc.

It is up to us to bring up the question of ACP regarding end of life goals of living / the three questions as described in previous blogs here. We cannot wait for patients to be the initiators of the conversation.

Opportunities to do this are plenty., starting with regular well visits,(medicare even pays separately for it now) or at start of any illness, hospital admission, or with diagnosis of a life limiting illness, admission to hospital with it or even admission to the ICU.

The reason is obvious. Since life is so unpredictable, we have to talk to patients while they have capacity to make their own decisions.(since that capacity can be lost in a flash with trauma or illness.

Thus the sooner we get it done, the better. And better late than never.

If we do not talk to our patients regarding their end of life wishes while hey have capacity, then we have missed the boat!! This is a great disservice to the ones under our care.

In my experience with admitted patients only 30 % have any sort of advance directives /living wills.
We are missing the boat in at least 70% of our patients if we do not actively do this.

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 ...

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.

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.