Jul 25, 2011

How to Communicate Medical Treatment Wishes and End of Life Goals -- Questionnaire

Doctors vary in style and and without direction will operate under their own assumptions. In order to avoid this the patient needs to spell out the kinds and types of care they want in advance.

By Joshua Uy, MD
Geriatric Medicine


Communicating your goals

How to Communicate Medical Treatment Wishes and End of Life Goals
Your medical situation is unique. As each person ages, every person has unique values, wishes, goals, medical illnesses, complications, and social situations. More than any other area of medicine, aging is not a “one-size-fits” all time. This is a time when people tend to have many doctors and multiple health care providers (such as hospice).

It is very important that you and your health care providers are on the same page when it comes to treatment, procedures and care goals. When this does not happen people can often feel misunderstood.

The following work sheet can be used to clarify treatments and goals; and then, can be given to your care providers to insure they understand your goals and wishes.


Editor Note: This is a very detailed work sheet. It is designed to answer a long list of medical questions that you might encourter with an elderly person, or with a person suffering from dementia. You might find many of these questions disconcerting. I think most of us know that when a crisis situation arises it is hard to think and do. It is also difficult to communicate with busy doctors and nurses in a hospital setting.

This questionnaire will help you prepare in advance and make it easier for you to communicate with doctors and nurses what the desired wishes of a "sick" or "suffering" patient are.

If you take the time to fill out this questionnaire now, you will have the answers to these sometimes inevitable questions in hand when you need them most.

Doctors vary in style and and without direction will operate under their own assumptions. In order to avoid this the patient needs to spell out the kinds and types of care they want in advance. You can fill out the forms below on your own behalf, or on behalf of someone that relies on you for care and well being. It is important that each person defines his or her own goals, limits and boundaries.

2. Goals and values in your own words

Think broadly. Some people define goals by function: being able to have a relationship with family, enjoy eating and going outside or being able to live alone. Others by comfort: ”I want to avoid pain.” Some by how long they want to live: “I want to live as long as possible no matter what.” And yet others by quality of life: “Being dependent on a feeding tube would rob me of my dignity.”

Consider how you would finish the following sentences:

“What is important to me ...”
“I would consider things to be going well if I could achieve...”
"Overall, at this time, this is the way I want to be treated..."

__________________________________________________________________________
__________________________________________________________________________
__________________________________________________________________________
__________________________________________________________________________
__________________________________________________________________________
Add more lines as needed.


In regard to living longer, I want to:

_____ Try to live as long as possible with aggressive medical interventions even if they are potentially painful or have complications.

_____ Live as long as possible with limits on medical treatments I consider too difficult to handle, painful or risky.  What I consider to be routine care is still desired.

_____ Be as comfortable as possible even if it means not living as long.  (Quality of life outweighs quantity of life).  What I consider to be routine care is still desired if tolerable.

_____ Living longer is no longer a goal for me.  I do not want any treatments that are only for the purpose of helping me live longer unless it is to bring me comfort.  

3. Quality of life


Every person defines their quality of life differently. For some it is defined by function (ability to do things for themselves), for others it defined by dignity (being able to think clearly or to be independent) and for others by being free of pain.  Take time to think about your current situation and how you would feel if your situation changed.  

Over the last several months, I have been able to do the following most of the time:
___ Shop for myself ___ Do housekeeping ___ Feed myself
___ Drive or get around town ___ Do laundry ___ Do my own grooming
___ Manage my own finances ___ Use a telephone ___ Walk or use a wheelchair
___ Manage my own medications ___ Bathe myself ___ Toilet myself
___ Cook for myself ___ Dress myself

Right now I enjoy spending my time doing the following:
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________

I wish I could do the following more or have the following changes in my current life:
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________

My living situation:
___ I live alone    ___ I live in an assisted living facility
___ I live with _________________ ___ I live in a nursing home
___ I have aides who come into my house ___ times per week for ___ hours at a time.  
___ I attend a senior center ____ times per week

Overall I consider my quality of life to be:  Good   Fair    Poor               Intolerable


What is your expectation of your future?
_____ My quality of life is stable.  My medical problems are stable.
_____ My quality of life is improving.  My medical problems are improving.
_____ My quality of life is declining slowly.  My medical problems are slowly getting worse.
_____ My quality of life is declining rapidly.  My medical problems are rapidly getting worse.




For my quality of life, please mark how you feel about the following situations if they were to happen to you.  
Difficult but acceptableWorth living but just barelyNot worth livingDon’t know
Unable to walk but able to propel a wheelchair
Unable to leave home
In pain most of time
Uncomfortable most of time (nausea, diarrhea, shortness of breath)
Depressed or “blue” most of the time
Fed through a feeding tube
Needed a breathing machine for each breath, which made me unable to talk
Required to have someone around 24 hours daily to care for you
Unable to control your bladder
Unable to control your bowels
Required to live in a nursing home
Confused and thinking unclearly much of the time
Unable to recognize family or friends
Unable to talk and be understood by others
In a condition that caused your family to feel worried or stressed
In a condition that caused a severe financial burden on your family

If you checked "worth living, but just barely" for more than one factor, would a combination of these factors make your life "not worth living?"  If so, which factors?

If you checked "not worth living," does this mean that you would rather die than be kept alive?

If you checked "can't answer now," what information or people do you need to help you decide?

Adapted from www.rihlp.org/pubs/Your_life_your_choices.pdf

Other forms for end of life care planning
http://www.agingwithdignity.org/five-wishes.php
http://www.ohsu.edu/polst/
http://www.wagpnetwork.com.au/client_images/177702.pdf
http://www.projectgrace.org/


4. My feelings on medical interventions:


Every person has different experiences and feelings about what type of medical treatments and care he/ she can handle.  Some hate needles, others are okay with having major surgery and being in the Intensive Care Unit (ICU).  

It is important that your doctor knows what you feel is tolerable (no big deal), not tolerable (I would not want them done under any circumstance, even to save my life). or interventions about which you need more information.  

What a person wants may change based on whether he needs it once or needs it on a routine basis.  It may also change depending on how likely it is to succeed.  

If I needed on a routine basis (became dependent) for my chronic medical problems to stay alive, this is how I feel about the following interventions: 

Multiple doctors Tolerable Not tolerable Unsure/depends
Multiple medications Tolerable Not tolerable Unsure/depends
Antibiotics in my vein Tolerable Not tolerable Unsure/depends
Feeding tube Tolerable Not tolerable Unsure/depends
Blood draws Tolerable Not tolerable Unsure/depends
Pacemaker Tolerable Not tolerable Unsure/depends
Xrays Tolerable Not tolerable Unsure/depends
Dialysis Tolerable Not tolerable Unsure/depends
Repeat hospital stays Tolerable Not tolerable Unsure/depends
Being on a ventilator Tolerable Not tolerable Unsure/depends



If I became very sick but my doctors felt my illness is still potentially treatable, this is how I feel about the following interventions if I need them temporarily:
 
Hospital care Tolerable Not tolerable Unsure/depends
ICU care Tolerable Not tolerable Unsure/depends
Being on a ventilator Tolerable Not tolerable Unsure/depends
Electric shocks Tolerable Not tolerable Unsure/depends
Pacemaker Tolerable Not tolerable Unsure/depends
Major surgery Tolerable Not tolerable Unsure/depends
Dialysis Tolerable Not tolerable Unsure/depends
Blood transfusion Tolerable Not tolerable Unsure/depends
Chemotherapy Tolerable Not tolerable Unsure/depends
Colonoscopy Tolerable Not tolerable Unsure/depends


___I want hospice services as soon as I am eligible

If my current or anticipated quality of life are unacceptable to me:
___Stop any intervention that would prolong my life ___Continue any intervention I consider tolerable

If I were close to death and treatment would only postpone the day of death but not improve my situation:
___Stop any intervention that would prolong my life ___Continue any intervention I consider tolerable

If I were found passed away (dead) with my heart not beating and not breathing:
___Please allow me to die naturally and notify my family and the funeral home.
___Please try to “bring me back” and send me to the hospital by 911 (see section on Code Status below)


5.  Is it time for hospice? (this section is only for those who are on hospice, or considering it)

Hospice is a unique service that tries to help people achieve quality of life goals who have 1) a limited life expectancy AND 2) goals that are more focused on comfort.  Hospice is a medical benefit that involves physicians, nurses, physical therapists, nutritionists, counselors, clergy, volunteers, and nurse aides.  Hospice also provides for medical equipment and medications to help achieve comfort and quality of life oriented goals.

Generally, if hospice has been brought in, someone has likely made the determination of a limited life expectancy.  
Even under Hospice care, people have differing goals.  

A.  Some who are on hospice are actually not ready for hospice (even if hospice eligible).  The physician may have made the recommendation but the person may feel that they have longer than 6 months to live, or may have no active symptoms that are difficult to control, or may feel that they can tolerate any treatment that has been suggested. 


It is perfectly okay for a person to say that although a physician is recommending hospice, he is not ready for it on a personal level.

This can be a frustrating time for physicians and patients because patients may feel that the physician is giving up and the physician may feel the patient is being unrealistic.  

It is okay to say to a physician, “I need time to understand what you are saying, come to grips with it, be sure and double check what you think is going to happen in the future because it is really different than what I though was going to happen to me.”

It is similar (in a much less serious level) to when a car mechanic tells you that your car needs thousands of dollars of repairs when you were expecting an oil change.

B.  Some on hospice actually feel pretty good despite having a shorter life expectancy.  These persons may still have things they enjoy in their life that they want to continue enjoying if possible.  Going to the hospital is usually no longer desirable.  Aggressive care or more involved care is also not desired but simple care may still be an option (medications, blood draws etc).


In this stage, treatment options are very tolerable for some and very intolerable for others such as blood transfusions or dialysis.  This is the stage where goals have to be very clear because there is a lot of individual variability.  

This stage has to be person directed:  each person gets to define his goals of care, limits of care and definition of his quality of life.

The reason to be on hospice is either to manage difficult symptoms or to maintain quality of life with less aggressive treatment options.


C.  Some are close to death and want all medical care and resources directed and keeping them comfortable.  Living longer is no longer a goal.  Effective therapeutic treatment options are either unavailable or intolerable.  Comfort oriented treatment (palliative care) is definitely available.  This is the classic hospice patient, but nowadays less so.  However, the hospice staff may still view all patients in this stage.

___My quality of life is great.  I think I could live 6 months or more.  I can tolerate my current medical care.  I see no need to change any medical treatments at this time.  I am not ready for hospice.  

___My quality of life is good but not as good as before.  Some parts of my medical care are difficult to handle (i.e. being in the hospital) but some are okay.  If my quality of life is reasonably maintained, I would like to live longer.  I am ready for hospice if I get to decide what I can handle and what I can not.  

___My quality of life is poor.  My comfort level is not as good as I would like it to be.  I do not feel I can handle going to the hospital or any more surgeries.  I want all my care directed at helping to achieve comfort.  Living longer is not a goal if this is the best I will be.  


6.  What is my “code status?”

People likely get asked this every time they get admitted to a hospital or sometimes if they see a new doctor.

In reality the question only deals with the scenario of when a person’s heart stops beating and he is not breathing (when a person is found dead).  Unfortunately a lot of misunderstanding occurs regarding the code status.  

There are situations where persons who wants to die naturally are denied other care that they would want (such as temporary breathing assistance).  Some persons who do want temporary breathing machine assistance make themselves “Full Code” even if they don’t actually want to be “coded” if they are found dead.

A code refers to both heart resuscitation and breathing assistance.  Resuscitation involves chest compression, electrical shock, medications in the vein. Breathing assistance involves putting a tube into the throat and using a hand pump or a machine to help a person breath.
 

DNR stands for do not resuscitate.
DNI stands for do not intubate.
DNH stands for do not hospitalize.

Partial Codes (i.e. DNI but not DNR)

Although we discuss code status as DNR/DNI making it seem like two separate procedures, in reality they are like the right and left wing of an airplane-they only work together. 


Recently, in an attempt to individualize care, some people are DNR but not DNI or DNI but not DNR.  Unfortunately a person will suffer much of the pain of resuscitation without having any of the benefits.  When “partial codes” are done, they always fail.

Complications and success rates


There are many potential complications of “codes.”  One is outside of a hospital they rarely work.  In nursing homes for example, the success rate is 0%.  Even in the hospital, the success rate of survival may be less than 10%.  

And the success rates declines by half after 80.


For most people, the code status does not matter since it rarely changes outcome (success rates are low).  It is more important that a person think about what level of care they want when they are alive in stable health and when they are sick than when they have already passed away. 

“Coding” can lead to poor outcomes such as someone having stroke-like symptoms or being in a persistent vegetative state where they are alive but unaware of their surroundings.  Rib fractures, bleeding into the chest, pain from the tube in the throat, and pain from the needles used to give medications are also very common problems.


If you checked that you would want your family and funeral home notified, your code status is DNR/DNI.  If you want an attempt made to bring you back to life, then you are a full code.
 

If I were found passed away (dead) with my heart not beating and not breathing my code status is:
___Full Code (bring me back)
___DNR/DNI (allow me to die naturally)


In addition to code status, some people add DNH (do not hospitalize) if they would rather die than suffer through another hospitalization.  If that is true of you, check the box below:
___Do not hospitalize



Goals of care


Name:____________________________     DOB_____/_____/_____        Date _____/_____/_____
Health care decision maker:________________________    Relationship:_______________________
POA Document:_____Yes   _____No Living will:_____Yes   _____No

Overall at this time the most important goals for my care are:
___________________________________________________________________________________

___________________________________________________________________________________

___________________________________________________________________________________

___________________________________________________________________________________
In regard to living longer, I want to:


_____ Try to live as long as possible with aggressive medical interventions even if they cause me to
                       suffer or lead to complications that may shorten my life.
_____ Live as long as possible with limits on medical treatments I consider too difficult to handle,                   
                       painful or risky.  What I consider to be routine care is still desired.
_____ Be as comfortable as possible even if it means not living as long.  (Quality of life outweighs
                       quantity of life).  What I consider to be routine care is still desired if tolerable.
_____ Living longer is no longer a goal for me.  I do not want any treatments that are only for the
                       purpose of helping me live longer unless it is to bring me comfort.


If I needed the following on a routine basis (became dependent on it), I would want the following:  (circle what you want, cross out what you do not want and if you are not sure, leave it unmarked)

Multiple doctors Multiple medications Fluids in my vein
Antibiotics in my vein Feeding tube Blood draws
Xrays Dialysis Repeat hospital stays

Being on a ventilator _________________ _____________________


If I became very sick but need the following temporarily, I would want the following:

(circle what you want, cross out what you do not want and if you are not sure, leave it unmarked)
Emergency room care Hospital care ICU care
Electric shocks Colonoscopy Being on a ventilator
Dialysis Blood transfusion Chemotherapy


Major surgery __________________ _______________________

If my current or anticipated quality of life were unacceptable to me:
___Stop any intervention that would prolong my life ___Continue anything I consider tolerable
If I were close to death and there was no hope of recovery I would want to:

___Stop any treatment that would prolong my life      ___Continue anything I circled above

___I want hospice services as soon as I am eligible


Code status: ;If I were found passed away (dead) without a pulse and not breathing, I would want:
___ An attempt at resuscitation (Full Code)       ___To be allowed to die naturally (DNR/DNI)


Dr. Joshua Daniel Uy, MD, specializes in geriatric medicine, is a family physician, and clinician educator. He is a Clinical Assistant Professor at Penn Medicine, part of the University of Pennsylvania.   You can read more by Dr Uy at THE GERIATRICIAN..