Letting Go and Managing Grief - the Loss of My Brother.

 Apologies for getting caught up with all that is going on in the world and being away from my writings.

We could talk forever on letting go and grief. 

Both are an essential part of one's life.

Mary Oliver said it so succinctly in her poem "In Blackwater Woods":

                          To live in this world

                            you must be able to do three things:

                            to love what is mortal;

                             to hold it

                            against your bones knowing

                            your own life depends on it;

                            and, when the time comes to let it go,

                            to let it it go.

I find myself turning to poetry in addition to prayers to help soothe my grief.

My brother was very sick in the late stages of prostate cancer. I travelled home 10,000 miles away with my masks on to see him. We spent a month together, living together, talking about old times, eating all meals together everyday, watching movies on TV and funny shows. We laughed a lot and cried a lot too as I took care of him and helped him with his pain and suffering the best I could. When he asked me how much time he had left in this world, I offered a safe guess of under 6 months. "You would be under hospice care if you were in the US," said I. He listened quietly but said that I was being kind, he knew it was much less. The dying know when time is near. He died two months later.

The time I spent with him was such a gift to me. I will always treasure it. Having been there,I was totally ready to let him go. He did not need to suffer any more. Of course I was very sad at losing my oldest brother but I was at peace, thanks to our time together. It helped me in my grief immensely.  What happens near end of life, stays with us forever. Having served him in his time of need was a source of strength and peace to me. I think of him fondly every morning at breakfast time, thinking of how we had such fun meal times.

When patients' families wonder as to what they can do. My sincere advice is for them to spend as much time as they can with the dying. "Tell them you love them, ask for forgiveness, forgive them, tell them it is ok if they have to go and that they will always be with you, you will miss them but you will be OK. And just be there in their presence. You really do not even have to say much. Silent presence is therapeutic too".

May you all be lucky to experience such loving moments with your friends and kin. 

Amen

ADVANCE CARE PLANNING - the KEY to Good End of Life Living and Saving Resources As Well

April 16 is National Healthcare Decisions Day, so here is a reminder thought:

Imagine if every adult were to have their GOALS OF CARE conversations and Advance Care Planning right now whether they are well or sick, then only treatments that are considered beneficial, according to the goals to be achieved will be given. Many patients with severe illnesses, multiple co-morbidities, life limiting illnesses would opt for comfort care over aggressive and invasive therapies that are known to have limited benefit.  We would be doing what is right for the patient according to their goals and wishes. This simple step would save valuable resources as well including personnel, medicines, antibiotics, blood, machines (vents, dialysis) to name a few.

This can be achieved IF we do not provide any non-beneficial treatments or unwanted treatments as requested by patients whether they have the corona virus infection or not! There is unnecessary use of resources in most hospitals at any given day- even when there is no Covid-19. Palliative Care teams and ethics committees have been addressing unnecessary and burdensome treatments for decades. So, if we can prevent these conflicts from arising in the first place we will better serve our patients as well as being better stewards of our resources. 

Research shows that approximately 30% of patients in the hospital have advance directives. Improving that statistic through proactive action would greatly improve outcomes.

And most other personnel including practicing physicians besides the hospital staff can help in achieving this goal by having these conversations with their patients in a proactive fashion before they get sick.

And general public can also help by being proactive and asking their physicians.

So, please call your physician and have your Advance Care Planning and Goals of Care discussions today while you still have capacity to make decisions!! You never know when, because of illness, injury or disease, you may lose that capability. Once that happens, your family is left with making the hard decisions .

PLEASE have the conversation and give the best gift you can give your loved ones so they may have a guide to decisions based on your goals and wishes.

With prayers for peace for all. Amen

Corona virus and the urgent need for Advance Care Planning

As we struggle with the uncertainty of the corona virus pandemic, it is clearly showing us the need for completing our advance directives and having those "courageous "conversations on the end of life that this blog has talked about so many times before.
Please see the blog post of 10-2-12 on "The 3 Questions" on how to have such talks in a simple practical manner.

We just do not know when we may lose our capacity to make decisions. It can happen in the blink of an eye. Thus the time to have these conversations with your loved ones is now! This is the best gift you will give them - taking the burden of decision-making off their shoulders, if ever the need arises.

The need to do this is heightened now so you may be treated according to YOUR GOALS and WISHES and NOT receive non-beneficial treatments unnecessarily, avoid stress and distress to yourself, your families and healthcare workers, decrease exposure of the virus to others and conserve resources appropriately.

Please talk to your healthcare team NOW!

I humbly offer my book "Courageous Conversations on Dying - the Gift of Palliative Care" as a great resource as well. (available on Amazon.com)

Please be proactive and be safe.
God Bless.

WORDS MATTER #2 Futile , Futility VS Non-beneficial

Language has to be as simple as possible for the lay person to understand what the medical folks mean. It is not necessary to use big medical terms and especially words where the meaning may be ambiguous.
Futile is just one such word. It is used frequently and debated frequently as well. Families and patients fail to see why a treatment is "futile" when clearly positive physiologic effects are seen, (even though the overall prognosis stays poor)

I prefer not to use this word at all... instead use the word non-beneficial and beneficial.
Thus, the conversation may go something like this, "The following treatments are of no benefit because they are not going to improve the clinical condition to the point where the patient feels it is meaningful to him/her. It is not going to help achieve the goals as jointly discussed and agreed upon;
therefore the following treatments will not be offered /or will be stopped as the case may be.
Same is true for CPR. If it is not going to be of any benefit in reaching the goals then doing CPR is of no use and ought not be done.

Reassure the patient and family that their care will not stop:
"What is of benefit to the patient ( your dad, grandma etc) has been given, is being given and will be given. Treatments that are of no benefit, that is they will not help us get to the goals and quality of life  the patient wanted, will be stopped or not offered ( like dialysis, CPR, PEG tube, etc as the case may be). Their care will never stop and any treatments that provide comfort will be given including medicines for pain.

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.