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A Good Goal - Quality of Life |
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Introduction
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Vital areas to be considered:
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1. Gain information and learning.
Try to make an assessment of your life, using a formula that Benjamin Franklin used. He would take a blank piece of paper and draw a line down the middle. On the right side he put the positives and on the left the negatives. He then started making a list of the positive things he would like to achieve, do or enjoy in life. On the negative side, he would list things that were hindrances and roadblocks and that were negative, depressive, or unobtainable in life.
2. Try to complete your pre end-of-life form including: A Durable Power of Attorney, Ethical Will, codicils of your requests for your end-of-life care and how you want to advise your family and friends of your wishes.
3. Set goals in life. The Benjamin Franklin list is just a beginning that is reviewed frequently, adding and subtracting things along the way. This leads to a sort of pathway, helping one set goals for what is important in life.
4. We often take family histories to review with our parents and grandparents, what ourselves, our spouses and children have done and wish to do in the goal-oriented type of philosophy. (The Life Tape Project)
Information and Learning
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It is very important (if you wish) to discuss with your doctor and medical team your current medical problems, the significance, the prognosis of what is possible to accomplish, and how you want to take care of your end-of-life wishes, both medically and socially. By doing this, you may free up your anxiety and concerns, so they are not only codified, but your family, friends and medical team know your wishes, so they can be respected. This may also bring up fears and hidden concerns.
Since these friends and family are the ones who are required to take care of these matters, it is important that they be brought into your inner circle and be advised of your wishes. This is the time to iron out differences, so they can be resolved to avoid hard feelings later. The common decisions, your home, the distribution of valuables, your properties, bank accounts and monies should be discussed, written down and codified, so there are fewer disagreements at the end of life, and your wishes are met.
A suggestion to accomplish this is to have a family meeting, maybe a dinner where this is done, and family members are asked to pick out items they feel are significant to remember you by. This family list can be changed and adjusted to avoid disagreements later in life, since each person is given a choice.
Another method we have found to be significant is to set up college funds for the children and grandchildren. These need not be large amounts of money, but a beginning where parents can then contribute over the years to enhance a potential college fund, if one hasn't already been established. In addition, giving a small but often significant item to grandchildren as a remembrance is a good feeling. Your children's shares will never be divided equally, but one can try as to save problems in the future. This should be written down. In our family, it's been set up on a computer program that can be altered as one's desires often change, and a person wishing one item may decline such and give it to another who felt it was more important to him.
Another item is the treatment of one's medical care. This should be discussed with all members of the family to avoid disappointment and disagreement. I have been on an Ethics Committee where family members met with faculty and clergy to try to resolve problems that could have been resolved earlier on. For example: Whether one should be intubated for respiratory insufficiency, or put on terminal sedation and given pain medications as necessary to assure total comfort care. It also covers whether one should have cardiovascular support (CVP) and what the limits of the CVP should be (whether drugs should be added) and when to stop treatment. People who are ill often acquire secondary and tertiary problems that are also life-threatening. There is the question of how long a period of time should be given to see if a treatment works and another period of time to accept death with comfort.
Knowing what a loved one wishes under certain grave situations is very important. This can reduce stress on family members, as well as the patient, so that all can abide by the loved one's wishes and minimize suffering.
Make an Assessment of Your Life
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Write down a summation of your life history by generations or childhood, youth, college/post college and major life events. Write about important achievements and accomplisments. Rate these events by their importance and significance. After reviewing these facts, write a summary of these events as an assessment of your life.
End-of-Life Forms
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It is important for patient, spouse and friends to go over what is known as end-of-life forms.
1. Should a person have a Do Not Resuscitate (DNR) form?
This is essential for any person entering a California hospital; although it's certainly not done because when one enters for a simple toe or hemorrhoid operation: One often hates to sign a DNR form, but there's always the possibility of having some type of drug reaction or surgical problem, where the need for one might arise. Having this form filled out saves aggravation and problems. Also, codicils are important, and I am including an example here of my codicil, where I wish to be protected from treatments that may not be to my best advantage and may be considered unnecessary and often unwanted.
An Example:
For myself, I used the phrase terminal sedation, which means do not hold back Morphine, Demerol or narcotics if I'm in pain to see if the pain will go away. If I do have pain, I want it treated now.
Another Example:
We, _____, wish to express our wishes on end-of-life care.
We have signed an Advanced Directive, and should we have any form of chronic illness, such as cancer, irreversible heart disease, kidney failure, Alzheimer's, or an incurable infectious disease process, we do NOT wish to invoke resuscitative orders and wish our DNR to be honored with no cardiovascular, pulmonary, or intravenous fluid support utilized.
We wish that our children be advised of this declaration, and it is our Legacy of Love that they not have to make decisions on the type of care we want during a period of failure of life and the need for end-of-life care.
The end-of-life care should be focused on comfort care with whatever sedation, narcotics for pain control, oxygen or whatever is needed to assure comfort at the time of end of life.
We would prefer home care, if feasible, although hospitalization is acceptable, as needed to provide a comfort care program. The need for feeding during the terminal phase of life is unnecessary and should not be implemented. During this phase of life, what is know as terminal sedation - a deep sleep with adequate sedation - is preferred to alleviate any potential or existing suffering.
Date Signature
Included is a list of forms that reveal where all the records are kept, the key to a trust account or bank vault, where records are kept. These should be available but might not be known to all family members.
Also, prearranged funeral affairs may be very helpful to reduce the stress on the family. Often, a coffin that's far too expensive than you would have wished is sold to your family, because they are told that the family member should have the best. For us, it is the simple, traditional, plain pine box for me; although, I did choose a slightly more elegant one for my wife, who, to me, is the most special person in my life.
The type of obituary is individual - mine is about four lines long, because I feel that if a person hasn't been good to me during my lifetime, the obituary has no meaning whatsoever. I will certainly write an extensive one for my wife, who has made all the difference in my life, my career, and made life not only graciously feasible but also graciously livable, as well as the many patients she has treated.
A list of other forms is included, which are self-explanatory.
Setting Goals in Life
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I would certainly bring back from the prior discussion the role of goals that are elucidated. Make a list of jobs, acomplishments, and wishes which would make your life feel successful and fulfilled. Use the Benjamin Franklin method described in the Vital areas to be considered.
Listening to the Patient
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The Life Tape Project
It is important to listen to the patient and hope that, she/he will be willing to talk about his/her life. We have a project at Stanford and the University of California/Mount Zion, which we tape a video and audio recording of family histories and genealogy. We try to have patients do this before they are too ill, to record the genealogy of their grandparents, their great grandparents, what they did, where they lived, how they interacted, remembrances of them, as well as parents and children. We hope that, this includes the entire family. We've had as many as fourteen members discuss their life history. I have spoken to one of my patients who still plays the tape done of his father's life history, wishes and philosophy now twenty-four years later. (Life Tapes Project)
It is important to talk about good times, tell jokes, laugh, and share the important remembrances of perhaps a trip made to Yosemite, the Grand Tetons or Yellowstone. It could be a trip to Las Vegas and how you had fun going to shows and enjoying life. Remembering the happier times often reduces despair, melancholy, sadness and depression and this can add a very positive communication experience during the later part of life when things may seem so dismal.
It is important to know how a patient feels when he is lying in bed with no visitors, when there is very little to say, except, "How are you feeling?" or "Is today a better day?" These are trivial conversations and the more positive conversation would be, "I remember a trip we had together when we were Boy Scouts and discovered", or "Remember when you got married and you wore the wrong colored shoes, and no one even noticed?"
Thinking and saying positive thoughts can be very supportive to promote well being and helping one feel better even under the gravest circumstances.
Do Things to Support the Patient
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Family and friends play a very important role in patient support. Not only are they important for giving medical care, but also in giving social care. It's important to keep hope as alive as possible, even under grave circumstances. This may be as important as exhausting the long list of medical, surgical and radiation programs that can help offer palliative treatment and help reduce pain and induce better comfort. Some people choose aggressive treatment and others choose minimal or palliative care. This is a personal choice that is individual for everyone. This choice should be expressed to all family and friends to reduce the conflict of over-treatment or under-treatment. Try to enjoy all the good events in life. Try to go to the wedding of a family member, a Bar Mitzvah or a christening (in a wheelchair if needed). Just knowing what to do, and doing it relieves stress and promotes peace of mind and quality of life.
It is important to do the best things you can to take care of yourself with the aid of the medical team, the social team of nurses, medical social workers, and hospice, as well as family members and friends. They can be helpful during these difficult times. The supporting companionship of relatives and friends helps a terminally ill patient gain peace of mind and love, and then with compassion and empathy becomes important during the final stage of life.
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