"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.

Making Decisions for Your Loved Ones

Making decisions for yourself is hard enough when it comes to thinking about end of life issues, but when families are forced to decide for their loved ones, the burden is just enormous!
It almost always involves withholding or withdrawing life prolonging treatments.
This happens frequently when one has lost the ability to understand or think clearly and thereby has lost the capacity for decision - making as a result of disease, trauma or old age and dementia etc.

There are five "standards" we could rely upon to help us with these difiicult decisions.
1- Substituted Standard - when patient's wishes are known, you follow their wishes in the decision-making.
This means either having a written advance directive or having had the difficult conversations earlier. Most of the families never get to do that and thus are totally in the dark.
Thus as I pointed out in an earlier post, having discussed the  "three questions" with the family is a gift one leaves behind.
Jack was 78 yrs old and very sick with heart failure,sepsis and  kidney failure, on the respirator , barely conscious in the ICU now for 6 days. Prospects for recovery were minimum.Wife wanted to continue going full press while the doctors and nurses felt more of a comfort only approach was appropriate.
Wife was not aware of any wishes. She was asked to go home and ask ALL family members if Jack had ever made any comments regarding how he may want to live or not at the end of life which may help us in decision-making.
The two sons clearly said that the father never wanted to be hooked to machines if he was not going to improve. Thus ineffective life prolonging treatments were stopped without guilt on anyone's part and Jack died in peace.

2- The Best Interest Standard - refers to doing what is in the best interest of the patient, looking at all the benefits and burdens of proposed treatments and management strategies.
3- Reasonable Person Standard - equates to what a reasonable person would do in this circumstance, a matter of discussion and debate
4- The Gold Standard - just like the golden rule; treat others as you would have them treat you.
In other words, what would you do if this was yourself.?
5- The Commonsence Standard  - The question I ask here of the families is as follows," If your loved one was to go to sleep and never wake up, in other words die, would you be ok with that? Will you be at peace?"
If the answer is yes, then the decision to stop life prolonging treatments is clear. This means that the patient 's present life is so poor that allowing natural death would be preferrable.
Alice at age 87 was slowly becoming feeble . Now , after two years of decline, she could not talk, just grunt, barely recognise anyone or smile and had lost the ability to care for self or eat normally.
Family was suffering by watching her like this. Although she was on a few cardiac meds only, they were stopped so her life would not be prolonged by any artificial means,  since it was not meaningful to her now.Comfort medicines were continued.She died a week later in peace.

Diificult as it is, there is help available at the hospitals with these tough decisions. One can make use of the Palliative Care Team services that are now a part of most hospitals.You may also call for the Ethics/Patient Care Advisory committee to help with difficult ethical dilemmas or conflicts.

The 3 Questions to Establish Minimum Living Standards at End of Life

There is a lot of confusion on how to manage the end of life well. It is a difficult subject to talk about with your parents or children, so most of us just avoid it. Eventually we get sick and are stuck in the ICU, unable now to make our decision and everybody we love is suffering with us not knowing what to do and not knowing what we would have liked done.
Here are three simple questions to help you achieve more control on your life.
If you get ill and your life is being prolonged by means of medicines and treatments, and the level of your existence is meaningful to you, then it is wonderful. But if the treatments are keeping you alive but at a level lower than what you would consider meaningful, then it is only delaying the inevitable and in the process making your life more painful and increasing suffering for you, your family and friends.

Thus if we could all establish that minimum level of existence for ourselves, doctors and hospitals would know when aggressive treatments are warranted and when just keeping the sick person comfortable would be the best thing to do.

This can be accomplished by simply answering "the 3 Questions" to establish:
1- the minimum mental functional level ( mental awareness level) that is acceptable to us with the help of life prolonging treatments.
2- the minimum physical level acceptable with the help of life prolonging treatments
and
3- the life prolonging treatments that are acceptable to us, or not; or acceptable for a period of time to see if we can get to our minimum acceptable level of living.

Some examples of lower mental awareness levels:
1- you can recognize your loved ones AND communicate with them
2- you can recognize others, but cannot communicate
3- you may focus on things but have no recognition
4- you are barely aware
5- you are unconscious
6- you have dementia, so can talk but have no idea what you are saying and what is going on.

Let's say you decide to pick example #1 , then in your advance directive you would write, "I want my life prolonged by life prolonging treatments as long as I can recognize and communicate with my loved ones, but I do not want my life prolonged artificially by means of any medicines or machines or artificial nutrition or hydration if I cannot communicate"
Also discuss your feelings about different levels of dementia and acceptance oflife prolonging treatments.

Some examples of lower physical function levels:
1- you need assistance with walking, bathing and dressing.
2- you are mostly in bed but can go to bathroom with assistance
3- you are totally bedridden, but can still swallow and enjoy food
4- you are totally bedridden and unable to swallow.
Obviously, there can be many other permutations to these.

Let's say you pick number 3, then you would write in your advance directive. "I do not want my life prolonged by medicines, machines or artificial nutrition if I am totally bedridden. If I get sick, I do not want to be treated, but do give me any and all treatments to keep me comfortable"

3- The third question has to do with life prolonging treatments you may not ever want eg intubation and respirator, or CPR or dialysis or tube feedings etc.
OR you may be willing for extraordinary treatments for a short while, say a week or two to see if you can be rehabilitated to your lowest acceptable levels as you have established by answering questions 1 and 2.

So , you would write in your directive,"I am willing to try any treatments for a period of one week (or two or more if that is what you are willing to endure), but if I do not get to my acceptable levels as mentioned above, please stop and just keep me comfortable"

Now, if you were to either put these in writing or just have a clear conversation with your family and your physician, then when the time comes, you will be treated as you wish.
AND this will be the best gift you can give your loved ones, making your own decisions so they will not have the burden of making these hard decisions!

Creating a document:
All your wishes can be put in writing, signed and witnessed by two persons, not your power of attorney for healthcare.
This now is equivalent of an advance directive and to be followed in case you become ill. It does not need to be done in a lawyer's office.
Be sure to give a copy to your family, friends, doctors and lawyers.

EXAMPLES:
Here are a couple of real examples from a couple of my patients ( names are changed for privacy and confidentiality reasons)

EXAMPLE #1:
 End of Life Wishes for Mrs JJ
1- I do not want my life prolonged by any means if I am unable to verbally communicate with my family even though I may be able to recognize them.
2- If I cannot get out of bed myself, please let me die in peace, do not extend my life by artificial medicines and machines.
3- Always make sure I am pain free and not suffering.

signed by JJ and witnessed by two not closely related

EXAMPLE #2:
                          End of Life Wishes for CC
1- Do not artificially prolong my life if I cannot recognize my family AND communicate with them.
2- You may treat my illness if I am able to recognize my family AND communicate with them BUT DO NOT artificially prolong this state by means of dialysis , respirator or artificial nutrition and hydration for more than a week!
3- If I am totally bedridden, please Do NOT treat any illness, but keep me comfortable
4- Artificial treatments are only acceptable if I can be rehabilitated to my goal as mentioned in # 2 above.
5- I do not want to be a burden to my family.
6- I want to die at home
7- If any questions arise, please contact my physician Dr A.

Signed by CC and witnessed by two

You can see how this is a simple way to control your destiny.


CPR: ( Cardiopulmonary resuscitation)
If you were to have a cardiac arrest and your wishes were known, then you would be resuscitated if you could be treated to reach your established minimum levels of existence, otherwise you would be allowed to die in peace. Thus you would control how you live and die.

It would be very helpful to have these discussions with the help of your physician, nurse etc. to address any and all questions you may have.

Please remember, you can always change your mind so this is not etched in stone.
If you already have an advance directive, you could add the 3 wishes to it. This establishes how you want to live that is meaningful to you, when you have lost capacity to make decisions anymore.

Why must I think and talk about end of life now?

You may ask why it is necessary to talk about end of life while you are relatively young and in good health?
There is no question that the end is coming and we will have to embark on this journey for sure. How to best prepare for it so it is painless as possible is the task before us all.
The problem is that most Americans want to die at home with their loved ones around. But unfortunately only about 30% of them do.
Over 50% die in hospitals, many in the intensive care units and on machines and following attempts on resuscitation; not a very dignified and gentle way to go! The remaining die in nursing homes and other long term facilities.
Take the case of Mrs M who was 93 yrs old, had dementia, was totally bed bound with flexion contractures of her extremities, bed sores and on tube feedings in a nursing home. She started to run fever, got sepsis (blood borne infection), difficulty breathing and was brought to the hospital.
She was admitted to the ICU and put on a ventilator. There was no advance directive and the family had not had any conversations about end of life with the patient. Family wanted everything done. When she had a cardiac arrest, she was resuscitated followed by two more arrests and attempts at resuscitation before she died! I am sure Mrs M did not wish to die in this manner, but she never talked to anyone about it while she had capacity to make her own decisions.
I can share hundreds of such true stories with you. Let us make sure yours is not one of them.
One may lose mental abilities to make decisions at any time due to multiple reasons. For example, severe illness, meningitis, dementia, trauma to head/ brain, intracranial bleed, stroke, neurologic disease, brain tumors, metabolic disease etc. 
Thus it behooves us to be proactive and talk to our loved ones about how we want to live if we are on life prolonging treatments so that our life is meaningful, as defined by us!
It is one of the best gifts you can give your loved ones. They will be eternally grateful that they did not have to make the hard decisions at the end, because you had already defined as to what kind of existence was acceptable to you!!
That is why it is necessary for you, me, us all to think and talk about end of life and define our minimal acceptable levels of living when we are on life prolonging treatments.

Roadmap to living the way you want near end of life

Finding your way without a roadmap makes the journey long, inefficient, confusing, frustrating and sometimes painful. A clear map and planning can avoid anxiety and wrong turns. Let's begin by providing just such a roadmap for the questions that may arise if you become ill. Keep in mind that this roadmap can be changed at anytime as long as you are able to do so mentally.
Treat, not to treat , how and how much to treat are the ethical questions that need your guidance.
In order to be treated the way you want, your wishes have to be known ahead of time since you may be too ill to do so later.
Although most states have official Advance Directive forms which you may have already completed, these forms tend to be long, cumbersome and difficult to understand and interpret and thus most people are reluctant to complete them.
This all can be simplified in a one page document if we focus on how we want to live and establish minimal goals of living as far as our mental and physical abilities go!
Once these are established , your physician would know how to take care of you , when to treat and when not to treat.
These can be added to your advance directive if you already have one. It will enhance it's operative value tremendously.
By taking the time to answer three questions you can provide a valuable roadmap to those around you.
The first two questions  address your minimum levels of mental and physical abilities that you are willing to live with , even if it is with the help of life prolonging treatments.
The third question addresses the types of artificial treatments and support you are willing to accept to help you attain at least your minimum goals of living.
It is advisable to do this in the presence and with the help of your physician/ medical advisor since there can be many nuances to these important discussions .
We will explore these three questions in detail in the near future.

Don't Despair

If you are reading this, it means you may have a need for help in dire circumstances and there seems to be no good alternative. End of life can be very difficult and troublesome in many ways. Patients and families suffer at many levels; physical, psychological, social and spiritual. It may seem that the end will be painful and difficult. If not managed well it may be. But having dealt with hundreds of cases over the last 20 years of my work in this field, I am convinced that we all deserve a good death. It is possible to achieve that if we take the appropriate steps in a timely fashion AND have an understanding, compassionate team of healthcare workers guiding us through.

The first step is to accept death as a normal part of life and prepare for this eventuality proactively.
What you do not want to experience is that you are severely ill and unable to make your own decisions and your family has to decide for your treatment options. This is a huge burden on them and many a times results in conflict among everyone involved. The sad part is that you, the patient , end up suffering unnecessarily.
So, early open and honest conversations with the family are an essential part of your end of life planning, just as you would plan for your assets etc.
Future blogs will give step by step examples and suggestions on how to go about it.