Welcome to the 6-Steps guide for making some of life's more challenging decisions.
I would like to begin by introducing myself. I am Richard Stuart, a psychologist with more than 50 years of clinical, teaching, and research experience, including decades of service on hospital ethics committees. As the population has aged, I have had increasing contact with seriously ill and dying elderly patients. I also have lived through the illnesses and deaths of relatives and close friends. And because of my age, I have had to overcome my own inclination to deny the inevitable. These experiences helped me understand the difficulty we all face in thinking about our own deaths, and the problems that often occur for ourselves and our loved ones when we dodge the issue. Therefore I decided to help everyone who is ready to accept reality create documents that will guide the end-of-life care they will receive. This free service is not bankrolled by insurance companies or healthcare institutions. It has no financial support so you and your loved ones will be its only beneficiaries.
In conversations with their loved ones, most people are more likely to discuss how they would like their possessions to be distributed after their death than the kind of care they would like to receive for the illness that will cause their death. However, without a Living Will, you put yourself at the mercy of other people, possibly strangers, who will make decisions about your medical care you if you are gravely ill and cannot speak for yourself. 6-Steps has been designed to give you a lasting voice. Since no one can know when illness or injury will strike, or when the capacity to speak will be lost, everyone should create a Living Will while it is still possible, regardless of age and state of health. We leave the most mportant words unpoken.
What's different about 6-Steps? Hundreds of Living Will forms are available, most of them are shorter than 6-Steps. Unfortunately, brevity can lead to lack of clarity. 6-Steps will take you places that other protocols avoid, such as considering the meaning of death, the cost of care, and the challenges of in-home death. It will help you carefully think through your values and beliefs and state your wishes clearly and completely enough for everyone to understand them. In this age of fast food and instant gratification many people have a tendency to look for a quick fix. Because the decisions you are about to make will influence the quality of the end of your life and the way you are remembered, they deserve all the time and effort you need to choose wisely.
6-Steps explains the logic of planning your treatment in advance.
It will help you clarify and communicate your values and beliefs about healthcare.
It will help you summarize these values as a Personal Statement of the meaning of your life, how you would like to live it until it ends, and how you would like to be remembered.
It will help you create an Advance Directive that describes the conditions, if any, that you consider to be worse than death, and the kind of treatment that you would like to receive should your health decline to that level.
It will help you decide who to choose to speak for you when you are not able to speak for yourself, appoint this person with a Durable Power of Attorney for Healthcare, and coach this person in how you want to be represented.
It will frame a way to discuss your wishes with your healthcare provider(s) and deliver a document that will remind them of who you are and what kind of care you want
Finally it will prompt you to do several things to incease the likelihood that your living is always available and impactful when you need it.
As you know, drug companies are required to tell patients about the unintended direct effects of the each medication they sell. They give this information in BLACK BOX WARNINGS. You will find similar warnings here to alert you to important aspects of some of the topics.
Great care has been taken to make this a balanced and unbiased presentation. But since any discussion of end-of-life care is heavily value laden, it is impossible to avoid being influenced by personal perspective. Any such influence is unintended: everything said here is an attempt to present the facts, with decisions left up to you.
BLACK BOX WARNING
Why should you care?
Just about everyone would like to either die while asleep or die painlessly and with dignity after a very short illness that doesn't impair their abiity to think coherently and converse effectively with loved ones. That is the green pattern below. Unfortunately most people will have very different deaths. Some will experience a sudden accident or illness (like a stroke) that will destroy their functioning but not end their lives for many months or years. Most will die after a serious of illnesses with occasional improvements, but steadily decline as illustrated in the red pattern below.
You probably know people whose eventual deaths followed the second pattern. Some probably died after receiving more painful and invasive treatments than they would have chosen for themselves. You may also know others who died without receiving life-prolonging intervention they wanted.
Excessive treatment is delivered when hospitals and providers “do everything.” This can happen for several reasons including the following.
Providers often believe that patients and their families want everything done.
Providers are afraid of being sued for malpractice if they fail to "do everything".
Institutions are prone to "make the most reversible error". In this case it means offering maximum treatment because they believe it is better to improperly prolong a life than to try to restore a life that was improperly ended.
Providers may be pressured to do more than is appropriate because they and/or the settings in which they work profit from the visits, procedures, and drugs that are used.
Not all providers follow newer protocols that lead to fewer, more targeted procedures that have empirically supported outcomes.
Some end-of-life treatments help prolong a life that patients consider worth living. But many of the treatments delay natural death and burden patients with great pain, stress, complications, and cost. This can condemn them to live in a condition that they regard as worse than death, and deny them the merciful and peaceful end of their lives they hoped to experience.
Although the normal standard of care is to “do everything," there are situations in which doctors decide when “everything” is too much. Margaret’s experience shows how doctors’ best judgments can conflict with the wishes of patients like Margaret.
Margaret is 81. She had suffered from congestive heart failure for years when she developed stage 1 pancreatic cancer. Because of the stress caused by her cancer, she passed out and was rushed to the hospital. It might have been true that Margaret was very unhappy about the quality of her life in the nursing home and was terrified of undergoing cancer treatment. In that case she could have considered it a blessing to have lost consciousness and been able to have a peaceful death. Seeing a very sick unconscious elderly woman, the doctor, who met her for the first time when she was admitted, assumed that this was the case and that she was ready to die. He therefore entered a do-not-resuscitate order in her chart. But Margaret was far from ready to go and did want her early-stage cancer treated even though she knew that she would be returned to the nursing home. The admitting doctor used his own judgment about whether Margaret valued the present quality of her life enough to be willing to undergo cancer treatment. Fortunately Margaret’s daughter, who was her healthcare representative, brought in a copy of her living will and her status was recoded as “full treatment." Without that, nothing would have been done to restart her heart.
A living will is by far your best way to avoid undergoing procedures that you don’t want and to get the procedures that you do want, and to be specific in your requests. "No heroic measures" is too vague; what is heroic to one may be cowardly to others, which is why specificity is essential. In addition, you will want your healthcare provider to enter medical orders in your record. These focus on specific actions and must be followed. You will find a sample Contingent Medical Order in the Guide and in the More Information section.
Everyone benefits if you create a living will.
Not only is a Living Will the best way for you to get the end-of-life care you want, it is also an precious gift to the loved ones and friends you will leave behind. When dying patients do not make their wishes known, other people’s judgment is substituted for decisions patients failed to make on their own. Post-death trauma is common for survivors who have been put in this role. Some have intense guilt and recurring nightmares ever after. They can be haunted by the image of a deceased loved one who is angry about having been made to suffer too long, or having been denied treatments he or she would have wanted. This heartrending video clip describes the compounded grief faced by family members who were forced to make decisions on their own because there was no Living Will to guide them.
Why doesn't everyone have one?
Some myths about Living Wills
Patients choosing palliative or comfort care die sooner.
NO! People often live longer when freed of the burden of pain and the side effects of invasive treatments.
Doctors know best
NO! Doctors know medicine but only patients know their own values and preferences.
Talking about dying and death causes anxiety and/or depression.
NO! Patients’ distress has been shown to diminish when they are given the facts about their condition and are empowered to make plans consistent with their values and beliefs.
People should not plan end-of-life care until they are dying.
NO! Patients are vulnerable unless they plan early. When you are seriously ill you may lose your capacity to decide, but you still have the right of personal autonomy. Unless you have an advance directive , decisioins can be made fore you that are the opposite of what you wamt. It is true that you can't know you exact condition in the future, but you can know your values and beliefs.
BLACK BOX WARNING
When should you create a living will?
In his remarkable book, The Best Care Possible, Dr. Ira Byock has an excellent answer to this question: For most people, it’s always too early until it’s too late. The time to do the work is when you can be relaxed and thoughtful about the process. You should create a generic Living Will early, knowing that you can revise it and add specifics if a terminal illness occurs in the future. Many people want to delay making the decisions until they suffer from multiple illnesses and are near death. However as we have seen, illnesses often involve serious episodes followed by some degree of recovery--until the recovery doesn't take place. Unfortunately it is often difficult for doctors and patients to predict with certainty which episodes will lead to irreversible deterioration. And fearing that the the news will depress their patients, doctors often choose not to tell patients that they are dying. These factors combine to make it difficult for patients to choose just the right moment to discuss their preferences for end-of-life care but those who wait too long may lack capacity to create legally acceptable documents. They also may not have the peace of mind needed to articulate the relationship between their core values and their end-of-life care decisions.
Many people are reluctant to make these critical decisions now. Everyone who has preferences for the kind of critical care he or she receives should always have a completed Living Will regardless of age or health status. Complete the documents now and you can download additional copies of any section of 6-Steps later if your preferences change or if you wish to choose a different healthcare representative. In fact thinking about and discussing the decisions that contribute to Living Wills should be an on-going process that gives you and the people you care about a chance to think about the meaning of life in the most practical terms.
How to get the most from this site
For best results, set aside an hour or two for the process. This is less time than it takes to watch a movie or a sporting event.
If possible, invite the person who will be your healthcare representative (or surrogate) to discuss each step with you. It is ideal when this person complete one for him or herself at the same time.
Click on the Facilitated Guide tab above and let me help you with each step.
When you have finished, please download and complete the Feedback form above so you can become part of the group that helps validate the 6-Step process.