6-STEPS Living Will
Facilitated Guide to Complete 6-Steps
As you will see, 6-Steps suggests that you seek the help of a Qualified Living Will Facilitator who can explain some of the nuances of the process of completing a Living Will. However facilitators are hard to find. In case you can’t find one, I will provide some guidance to help you clarify your thinking and facilitate your decision-making. To make this a little more friendly, I'd like to introduce myself.
Hi, I'm Richard Stuart
This guide is intended to add to your understanding of the content of 6-Steps, not to replace it. It is best to begin by reading the comments on each step in this guide and then to complete the items in 6-Steps.
Most people have difficulty thinking about Living Wills when they are optimistic and in good health, knowing they would accept any treatment of an illness or injury. But your Living Will will come into play only if and when you are terminally ill and you cannot speak for yourself. Therefore, in thinking about your responses, try to imagine yourself unconscious, with the probability that if you regain consciousness you may not be able to control your breathing and other bodily functions, possibly experience great pain, and/or disorientation, with little hope of significant recovery.
You won’t need a living will if you die suddenly, ideally in your sleep. But most people have a slow trajectory toward death with many ups and downs. They become sick, worsen, improve a little, get sicker, improve less, get even sicker until they die. This could go on for months, years, or even decades.
As long as you can responsibly speak for yourself, you can make your own decisions. But if you wait too long, you may lose decision-making capacity so others will make critical decisions for you. That would be fine if they know what you would choose for yourself, but it can be very problematic if you failed to make your requests known or if they are not understood. 6-Steps is designed to guard against both of these possibilities.
As a Living Will, 6-Steps is both a personal and social document. The
personal component is the expression of your values, beliefs, and treatment preferences. The social component is the series of conversations about your Living Will that you should have with your significant others and your healthcare providers.
Your significant others. You have begun the process of creating your living will by thinking about your own values about life and death. If you share your thinking with your family and friends, they will be far more able to deliver the support you would like when you need it. You will also spare them the pain of having to argue with each other about what you might want, allowing them to cooperate in doing what you hoped they would do for you. (For more information, see RESPECTING CHOICES® ADVANCE CARE PLANNING - GUNDERSEN HEALTH SYSTEM)
With your providers. You need information to understand the potential benefits and costs of treatment alternatives. It helps if you do some research on your own and then schedule an appointment with your providers to discuss what you learned. Since one treatment, like one shoe, does not suit everyone, your providers also need information about you so they can match treatment recommendations with your personal preferences and needs.
Clarifying some terms
There is little standardization in the language of advance care planning.
6-Steps uses “Living Will” to include three formal documents.
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Personal Statement
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Advance Directive
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Durable Power of Attorney for Healthcare
The cost/benefit basis of the decisions you are about to make.
Your Advance Directive will ask you to chose which of the following types of care you will want at various stages of your illness.
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Full, aggressive, or curative treatment
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Limited treatment
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Comfort-care only
Of course all providers try to minimize patient pain and distress. But many active interventions produce pain, complications, and increased disability as unintended, but predictable effects. As is true throughout healthcare, the choice between using and not using a procedure is the product of cost-benefit analysis. For example, many chemotherapy drugs used in the treatment of cancer can slow the rate of tumor growth but they can also cause nausea, fatigue, pain, and adversely strain many organs and tissues.
Although it is difficult to quantify the costs and benefits, patients must basically decide:
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How much suffering they are willing to endure?
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How much benefit they expect, e.g. additional days, weeks, months or years?
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What is the probability of success?
For some people, life is so inherently valuable that the cost of every possible treatment is worth the benefits, even if it has less than a 1% chance of extending their lives for a few days or even hours. In contrast, others would want to undergo treatments only if they are relatively non-invasive and have a high probability of extending their lives for more than a few months if not years. The best choice for you depends upon your values, goals, and endurance.
BLACK BOX WARNING
There are pros and cons for any choice that you make. If you choose full treatment, your life may be prolonged but you may undergo great suffering. Full treatment is usually much more expensive, so you and your family will have less money for things other than medical costs. If you choose comfort-care only, you will probably have less physical and emotional distress but you might lose out on the possibility of a longer life. Comfort-care only is often much cheaper, but while your family may enjoy the savings, you may not be alive to share in that joy. The decision about which course to pursue is deeply personal. There is no inherently right choice. The path that is more right for you (none is perfect!), may be wrong for others, some of whom may even be your loved ones. The only wrong choice is not taking responsibility for making the decision for yourself.
Which treatment should you choose?
For additional information see:
STEP 1
Please turn to Step 1 and express your beliefs. The list of options is brief and illustrative: feel free to add other two-choice comparisons if values important to you are missing. Then contrast the number of checks you made in Columns A and B. As you can see, more Column A items suggest that you focus more on the length of your life than its quality, want more aggressive intervention, and/or are willing to leave some of the decisions up to others. More Column B items suggest that you are more interested in the quality than the length of your life, want to avoid invasive procedures and focus on being comfortable, and/or want to be the decision maker.
In the concluding section of this Step you will find four illustrations of how these choices play out in life. If you are doing this with the person who will later represent you, you might want to take turns reading the descriptions aloud and share your thoughts about each situation as a way to better understand each other. Note that in all four of the examples the patients did not have the capacity to make decisions, so the treatment they received was either determined by their Living Wills or was the institution's default mode of Full Treatment.
If you think that your values conflict in any way with the teachings of organizations that are important to you, it would be useful for you to discuss any possible conflicts with the group's advisers. For example, if you are a Jehovah's Witness, the church's teachings may prevent you from receiving the blood transfusion that is recommended. But at other times, various groups within an organization may the be inconsistent. For example the Catholic Medical Association suggests that believers have a duty to prolong their lives at all costs, one of which may be prolonged use of intubation or taking in fluids and nutrition by tube. But others, including the Consortium of Jesuit Bioethics Programs respect the efforts of families to protect their loved ones from suffering due to treatments they consider to be extraordinary. And the Washington State Catholic Conference has repeatedly stated that while hospitals are required to offer extraordinary treatments, patients are not required to accept them. It is best to begin efforts to discuss possible value conflicts with representatives of the organizations when you can think clearly, that is before you are in crisis mode. Remember, though, that the ultimate decisions are yours to make.
STEP 2
Virtually every other Living will consists of two documents: an Advance Directive and a Durable Power of Attorney for Health. The 6-Steps approach has a third component, a Personal Statement that provides a very personal context for your Advance Directive, providing a basis for decisions that it does not cover. This is your way to have a conversation with your providers, health care advocate, and significant others about who you are, the kind of care that you want to receive, and how you want to be remembered with your providers. It reminds them of who you are as a person.
For example, do you think that in order to seen as heroic you must endure as much pain and distress as humanly possible? Or do you think it is important for you to preserve as much of your current identity as possible so you can be remembered as the person you have been for most of your adult life? It is also important to take stock of the goals that give meaning to your life, some of which you have achieved, others are works in progress. You might find answers to the following questions useful additions to your Personal Statement.
Up to this point, how well do you believe that you accomplished the goals that are important to you?
5 4 3 2 1
Completely Somewhat Little
Are there other goals that you would like to achieve while you are still able?
5 4 3 2 1
Definitely Possibly Not really
If so, please tell us what you would like to accomplish.
1.__________________________________
2.__________________________________
3.__________________________________
Your answers provide the foundation for the next two critical questions.
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Do you want to prolong your life as long as possible without regard to its quality?
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Can you imagine conditions in which the quality of your life falls so low that you would think it is no longer worth living?
Your personal statement is also a good opportunity for you to express your health-related cultural and religious beliefs and fears. For example:
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Do you believe, as many African-Americans do, that by completing a Living Will you increase the chances that care will be withheld or prematurely withdrawn or that family members rather than patients should make treatment decisions?
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Do you believe, as reported by many people of Chinese descent, that talking about death will hasten it, so they are reluctant to create Living Wills?
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Do you believe, as reported by many people of Mexican-American descent, that enduring great pain and illness is a sign of personal strength and that family members must often care for sick relatives, often with traditional remedies?
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Do you believe, as reported by Orthodox Jews and many Muslims, that your body must be buried in tact and/or within one or two days of your death?
Your providers cannot know these extremely important things about you unless you state them because every person has a unique set of beliefs that cannot be assumed from place or origin or religious affiliation.
The next thing to consider is whether you want to add an Ethical Will to your Personal Statement. This is a letter in which you can share with others the lessons you have learned through your lifetime. The earliest mention of Ethical Wills appeared in the Old Testament when Jacob summarized the wisdom he gained for his children. (See: WRITING AND READING ETHICAL WILLS - MYJEWISHLEARNING.COM) Advocates of Ethical Wills stress their value as a way for the author to make sense of his or her own life, to begin a conversation with the people who are most important to them, and to leave a legacy for their survivors. (See: ETHICAL WILLS - LIFE-LEGACIES.COM).
Since your Personal Statement and Ethical Will are ways to tell your survivors how you would like to be remembered, you may also want to include photos and video clips. (See: THE ETHICAL WILL, AN ANCIENT CONCEPT, IS REVAMPED FOR THE TECH AGE - NYTIMES.COM).
For additional information see More Information tabs:
What are the differences between extending life vs. natural death vs. hastening death?
Also, if you have not done so before, this is a good time to visit: www.honoringchoicespnw.org/
Another useful site is the Stanford letter project where you will find templates for letters that articulate you wishes for your doctor, family members and others: http://med.stanford.edu/letter.html
Step 3
Knowledge of your values and beliefs establishes the foundation for your Advance Directive. Bear in mind that this document helps you describe how you want to live until illness causes your death. You will describe the conditions, if any, that you consider worse than death, and the treatments you are willing to undergo if you experience the types of conditions that will be described.
In essence you will be choosing between:
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“Do everything regardless of my condition and the various risks and costs of the procedures in an effort to prolong my life.”
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For a limited time, do only the procedures that I select only if they are likely to allow me to live the life I value but not merely to prolong my life in a condition that I consider worse than death.
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“Do everything that will preserve my life at the standard that I consider acceptable, allowing me to have a natural death.”
This process will ask you to make decisions that most patients expect their doctors to make. As a reminder, your doctors are experts in medicine but you are the expert when it comes to how you want your life to end. Although most doctors care deeply about their patients, they may have personal and professional values that conflict with yours. For example, your a 2014 Medscape study found 60% of cardiologists, 53% of oncologists, and 73% of emergency room doctors were willing to consider treatments they believed would be futile. Your doctors can prescribe treatments, but you have the right to accept or reject the prescription in person or through your healthcare representative who presents you living will.
You, rather than your doctor, should be the principal decision maker for another reason. If your experience matches that of the average patient who is hospitalized with a fatal illness, you will be seen by 5 specialists in the final weeks of your life. This may be the first and only contact that some of these doctors will have with you so they cannot be expected to know your wishes. You really don't want your care to be planned by someone who knows you only as the patient in bed 237A on the 8 West ward. Finally, you might have doctors who have a hard time viewing the situation from your perspective and instead recommend what they would choose for themselves or their loved ones. In any of these situations, your chance of getting the kind of care you want depends upon an advance directive that clearly states your wishes and a healthcare representative who will effectively present it.
In making these selections, it is important to recognize that may are highly complex. For example, although nutrition and hydration are basic human needs, once they are provided artificially it may be impossible to reverse the process and in the final stages of life, the anorexia that results from not eating and dehydration that results from not drinking have been found to increase a sense of well being. Therefore in making these decisions you are encouraged to stipulate conditions for their use, e.g. how they are delivered (with or without use of PEG-tube) and if or when they should be terminated (e.g. with a life expectancy of one week or less).
Some people find it easier to answer question 3 before question 2. This gives them a chance to decide whether there are any conditions from which they cannot recover that they would consider unbearable and therefore worse than death. Returning to question 2, they can then decide whether they value the length of life (meaning that they want to live regardless of their condition) or the quality of life (meaning that they do not want to live if they experience suffering they consider unbearable). To give you some perspective, the data in the chart below, as summarized by the Coalition to Transform Advanced Care, allows you to see how your wishes compare with those of patients in various national studies.
Item 4 asks you to choose between full aggressive or curative treatment, limited treatment or comfort care only. Your decision about the relative value of length of life and quality of life establish the context for your choice to receive or reject each of the treatment options available to you.
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If you value the length of life more than its quality you can either skip this item because all the interventions are included in "full treatment", or you can answer "Yes" to all of the options in Item 6. These treatments will be used in extreme efforts to help delay your death.
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If you are more concerned about the quality of life you will probably answer "No" to some if not all of the options.
The first item asks you to choose one of three options regarding CPR. Most forms ask patients to choose whether they want to be resuscitated any time their heart stops beating to prolong their life, or whether they never want anything done that would delay their natural death. Here you are offered a middle alternative: to be resuscitated if you suffer cardiac arrest as a result of a treatable event such as an adverse drug reaction, insect bite, or electric shock. Having this option helps many people feel more comfortable about signing an advance directive.
Item 5 asks you to choose between "Do resuscitate at any time my heart stops", "Do resuscitate if my heart stopped due to a temporary reversible event", or "Do not resuscitate ...under any circumstances". Those choosing full treatment will want resuscitation always. Those seeking the soonest natural death will reject resuscitation always. It is my recommendation that even those who seek a natural death choose the "middle" option so their lives are not terminated by something readily corrected like a medical error due to an incorrect prescription or procedural mistake, or an adverse reaction to a food to which you are allergic or an insect bite.
Unfortunately, misdiagnosis is rampant. For example a recent study in the Journal of the American Medical Association (doi.10.1001/jama.2023.0577) found that 5.7 patents seen in Emergency Departments were misdiagnosed leading to 2.5 million harms. You could be one of those harmed and it would be tragic for you to die from the mistake.
Item 6 asks you to choose the details of what specific procedures you do and do not want, and any special considerations for using them. In choosing these options, it is important to remember that each alternative has benefits under some conditions, but major costs under others. Be sure to get complete information about all procedures including their hoped for and potential adverse effects. Beware of falling prey to confirmatory bias, i.e. the tendency to look for information that you want to find and reject information that conflicts with what you want. (See the More Information tab "Getting the Facts" for suggestions about how to find more accurate information.)
If you want all treatments all the time, you are prepared to endure at least some potentially uncomfortable unwanted effects. But if you are sicker and require long-term use, knowing the ill-effects of the life prolonging procedures will help you decide which to accept or refuse. CPR can restore pulse and respiration, but in doing so it can break ribs and occur too late to prevent major brain and organ damage due to the lack of oxygen. Once your heart resumes beating, you jigyht need a BIVAD (biventricular assist device) to sustain its functioning, a procedure that is associat4ed with its own set of risks. It is also be important bear in mind that AND (Allow Natural Death) and DNR (Do Not Resuscitate) orders do not mean "Do Not Care or Treat". Mechanical respiration can improve your blood/oxygen level but can make it difficult or even impossible for you to talk and cause extremely uncomfortable dry mouth. Fluids by nutrition by tube can supply essentials for continued life, but because the tubes are painful, many patients' hands are restrained to prevent their removal, they are associated with very slow healing abscesses, they can introduce more substances than the body can absorb so they can lead to painfully bulging organs, and once inserted it may be impossible to remove the tubes. Pacemakers can prolong heart beats, and 2 or 3 times/week dialysis can provide a kidney alternative, sometimes long after brains have continued to function. The principle that should guide these decisions is the importance you place on the length of your life as opposed to its quality.
Item 7 is a validity check to make certain that your answers are consistent. It asks you to identify the type of treatment you would like in each of four conditions.addresses these same choices in a broader perspective. Again, if you value length over quality of life, you will choose full treatment for each of the four possible conditions. If you value quality of life more than its length, you will choose Limited or Comfort care for one or more of these conditions. You can reread the 4 patient descriptions in Step 1 as reminder of what would be done using each type of treatment.
Item 8 You may develop an illness that is not like any of those identified in Item 4. allows you to remind your healthcare representatives and providers that you have created a Personal Statement that expresses the values that you would you want them to as guides in planning the management of your actual illness.
Item 9 asks about the place in which you would ideally like to die. You may or may not be able to have a choice. For example if you are fatally injured in an accident, you will be transported to an emergency department where your life will end quickly. This is a much more complicated decision than you may imagine.
Many people think that they would like to die at home, perhaps remembering images in black-and-white movies in which grandpa conversed with his loving family at his bedside before saying a final "goodbye." If death comes swiftly it can be deeply gratifying to help loved ones die peacefully at home. But there are flaws in this beautiful picture because many people with terminal illnesses today are often in much worse condition than the grandpa on the silver screen. They tend to be older, suffer from a number of incapacitating illnesses with symptoms including pain and disorientation, and live longer with the help of medical technology. It is important for both patient and family to consider the emotional, physical, and economic cost of prolonged home-care.
The downside of dying at home
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Conversation with the dying person may be impossible due to his or her lack of ability to talk and think clearly and because caregivers are too busy taking care of basic physical needs that the person can no longer manage independently.
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Family caregivers often lack the necessary technical and nursing skills or they may be too uncomfortable to perform them. This includes understanding doctors' complex instructions, managing IVs feeding tubes and other assistive devices for breathing, mobility, and catheters and delivering wound care and other essential services.
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Family caregivers may not have the strength need to turn patients in bed, help them between bed and bathroom, and/or help them up from falls.
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Family caregiving has been found to require 65.8 hours per seek in the last year of life, with the time devoted to personal tasks including walking, dressing, eating (i.e. menu planning, shopping, cooking, feeding, and cleaning up, bedding, bathing and toileting, consulting with providers, ordering and administering medication, managing health aides such as oxygen. To provide these services, family caregivers often have to reduce outside employment or even stop working in order to provide the necessary 24/7 care. This leads to lost income, adding to the economic burden of the illness and its treatment.
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Caring for a very sick person is also socially isolating. Home care-givers are often on call 24/7 and have limited opportunity to leave the house for anything other than tasks like food or medication shopping and are often unable to entertain at home because of the presence of so much equipment, like a hospital bed, required for patient care.
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When children take care of their sick parents at home they offer suffer the emotional burdens related to role reversal when, for example, they are exposed to intimate details of their parents' bodies as when they must frequently change and catheters etc.
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As a result of all these demands, compared to those whose loved ones do not die at home, family caregivers often experience intense performance anxiety and are at risk of depression, anxiety, post-traumatic stress disorder, and physical illness. In addition, despite the sense of love and loyalty that motivates them to offer in-home care, they often also experience intense guilt that stems from the ambivalence that they feel when they feel obliged to exchange the satisfactions in their normal lives for the stress of caring for someone whose demands are ever increasing and whose ability to acknowledge the care received diminishes proportionately.
BLACK BOX WARNING
It is important to note that skilled nursing care may be needed to reduce the burden of dying for seriously ill patients. Home hospice, when available, can lighten some if not all of these burdens. A variety of new models support in-home providers and improve patients' experiences. These include transitional care, longitudinal in-home primary care, and telemedicine all of which were spawned by the Program for All-Inclusive Care of the Elderly (PACE) that became a federal benefit in 1997. Some, but not necessarily all, of the cost of this service is normally covered by Medicare. (Detailed information about these programs can be found in the "Home Care" section of the "Bibliography for Professionals" More tab.)
If you are terminally ill, have lost the ability to think clearly and communicate with others, or are completely dependent upon others for help in meeting your personal needs, you may want to consider giving your family permission to have you moved to an outside care facility. Although the out-of-pocket cost may be greater than in-home care, placement in a hospice facility would give you access to professional quality help and give you enough privacy to preserve your dignity. And the extra cost may be defrayed by your love ones' ability to earn money during the hours that would have been spent on caring for you. You might live in a hospice facility only long enough to stabilize your condition so you return home, or it might be the place in which you die. And most hospices are wonderfully accommodating to families wishing to remain close to a dying loved one.
Item 10 This question addresses the possibility of Medical Aid in Dying (MAID). Currently, MAID is available only to those nearing death due to a progressive terminal illness. This will not interest you if you chose curative care always. But if you chose limited or comfort care, you might want to request medical help in dying to escape the rigors of a life that you consider worse than death. You can learn about the availability, nature, and requirements of this service at https://www.acamaid.org/ and in the More Information tab: Medical Aid In Dying with Dignity.
Items 11through 18 are straightforward. Some are designed to preserve your rights, e.g. your right to modify any element of your Advance Directive whenever you wish to do so, your right to be transferred to a provider or facility where your requests will be honored, and your wish to have all remaining provisions honored if one is found to be invalid. Others, like voiding your Advance Directive if you are pregnant, are required by the laws in many states .
Item 19. Your living will is an advisory document. It can advise your healthcare representative and provides about your preferences, but it does not direct your care. You also need a formal medical order signed by your doctor, and ideally by you and your surrogate. I recommend that you complete either the Conditional Medical Order (CMO) below or Medical Order for End-of-Life Intervention (MOELI) for this purpose. You can find these forms in a More Information Tab. Although not as good, a POST, MOLST, or MOST (formerly POLST) form may suffice. For information see: https://polst.org/about/
Conditional Medical Orders
Patient:______________________________________________________ Date of birth:________________ Gender _____
ID/Record number_________________________________________________
For clinician: Patient demonstrates sufficient decision-making capacity: ____Yes ___No
For clinician: Patient heath-literacy is sufficient to understand decision. ____Yes. ___No
For Patient: My general goal is:
___ To live as long as possible regardless of the quality of my life. For this reason, I want all potentially helpful treatments.
___ I want to try a limited course of treatments only as long as there is a reasonable chance of my being able to live a life that I value. For instance, I might want to be able to: read material I find interesting, manage my own bodily functions, and/or recognize and converse coherently with others. If it is unlikely that I can retain the quality of life I desire, I do not want treatments that would prolong my life.
___To die naturally if I have an irreversible, rapidly progressing terminal illness or an extremely painful chronic condition that limits my ability to take care of myself. I want care focused on making me as comfortable as possible until I die.
(For clarification, if needed, see my Final Statement and 6-steps Living will dated ______________________
Options for Conditional Resuscitation Orders
___ACPR: DO Attempt to bring me back to life at any time that my heart or lungs are failing.
___DNAR-X: DO NOT Attempt to bring me back to life EXCEPT if I can my heart rate and breathing can be restored if they stopped because of some reversible event (such as an allergic, accident, or reaction or medical error.
___DNAR: DO NOT Attempt to bring me back to life if my heart or lungs fail, regardless of the cause. Allow me to die.
Options for Conditional Ventilation Orders
___AV: DO Always Ventilate me (use a machine to breathe for me) by any means for any duration recommended
___IVM-C: Use Invasive Ventilation Methods ONLY if needed to bring me back to life to treat a sudden event that is reversible. OTHERWSE use only Non-invasive Ventilation as needed.
___DNI: DO NOT ventilate me if the only purpose is to delay my death. Give me oxygen via noninvasive canula only to keep me comfortable.
Options for Conditional Artificial Nutrition and Hydration Orders
___AANH: Always give me food and liquid by any method, as long as recommended.
___NAH-X: DO NOT give me food and liquid by IV or a tube into my stomach EXCEPT for a short time to achieve a specific goal.
___DNANH: DO NOT give me any food and liquid by IV or a tube into my stomach. Give me nutrition and hydration only by mouth. Do not attempt to force food or liquid into my body.
Additional option that can be chosen along with ANH-X or DNANH
___VCED: Allow my Voluntary Cessation of Eating and Drinking, making me as comfortable as possible while awaiting death. Do not attempt to provide food or liquid by mouth, other than as needed to administer comforting medications, or ice chips or lozenge for comfort.
Additional medical procedures:
___If I have a terminal illness, I want medication and other procedures including surgery only to make me comfortable
Please refer to my most recent personal statement to clarify this.
___DO. ___DO NOT want to be offered Medical Aid in Dying if I meet the legal requirements for the service. If I want thus service and the provider(s) treating me or the institution in which I am being treated does not permit it, I wish to be transferred immediately to a provider and/or institution that will honor this carefully considered request.
Further additions:_______________________________________________________________________________________
I hold blameless any provider who honors this order in good faith. YES____ Initial NO____ Initial
____________________________________________________________ ____________
Physician, RN, ARNP, or PA-C Date
____________________________________________________________. ____________
Patient Date
____________________________________________________________ _____________
Surrogate
Signatures. When you have completed your Advance Directive you are ready to sign it and have your signature witnessed. Most states accept validation by two witnesses but some states require notarization. It is important for you to learn whether notarization is required where you live.
Witnesses and notaries.
States have different policies with regard to signature guarantees. Some require notarization but others accept two witnesses. Witnesses cannot be employees of the healthcare provider or organization in which the document is completed. They must be 21 or older and ideally should not be heirs of person whose signatures they guarantee. To make the guarantee valid, the documents should be signed in the presence of the witnesses.
The following link will give you information about the state in which you reside:
Download Your State's Advance Directives - Caring Connections
Step 4
The Durable Power of Attorney for Health Care (DPOA) is an unusual legal document. “Durable” means that it remains in effect after you lose decision-making capacity and remains in effect unless you regain capacity. It is also extremely powerful. If the person you designate to be your Healthcare Representative, Agent, or Surrogate does a good job of presenting your Living Will, your Personal Statement and Advance Directive will determine the kind of end-of-life care you receive.
Choosing this person wisely is of the greatest importance. Approximately 70% choose their next of kin, often their partner. Doing so is a good idea if that person meets the seven criteria listed in Step 4. But the next of kin and the others chosen by the remaining 30% must be ready to overcome some very large challenges.
For example they must be careful:
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NOT to assume that they share your values and goals just because you are related;
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NOT to prolong your life longer than you want for reasons of their own (in other words, be able to separate their own needs and wishes from your preferences);
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NOT to yield to pressure from people who disagree with your wishes;
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TO weigh the benefits and burdens of a procedure in terms of impact on the chance of recovery, comfort, and financial and emotional costs.
The chosen representatives should also have the skills required to be effective advocates. They should be able to control their emotions enough in a crisis to fully understand the physical, psychological, and economic effects of treatment alternatives. They should be able to express themselves clearly and to negotiate when necessary. They should be able to facilitate negotiation of differences among family members and between family and providers. If you doubt a relative's ability to do a good job for you, you could consider a close long-term friend or a professional who knows you well but is not involved in your care.
6-Steps asks you to name alternative representatives in case the primary person is not available when needed. Most states have policies governing the order in which other relatives can be chosen, similar to the list mentioned in the form.
Unlike all other DPOA forms, 6-Steps allows you to designate relatives who you do not want involved in making treatment decisions for you.
Please note that although you will be listing multiple names, only one person is legally authorized to act for you at any given time. In the heat of a crisis, decision-making could be paralyzed if two or more people disagree.
Finally, the form asks you to determine how much latitude you want your representative to have. Do you want your Advance Directive honored exactly as written, or would you like your representative to use his or her discretion to include others in deliberating the pros and cons of treatment alternatives? At your request, others can be consulted, but only your designated representative is authorized to speak for you.
To summarize, there are three stages to this step.
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Make a list of all of the candidates.
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When you have selected a representative and alternate, ask if they are willing to assume this very great responsibility.
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Discuss your preferences and goals with your primary and back-up representatives. Ask that they repeat your wishes until you are certain you are understood.
You can have the best Personal Statement and Advance Directive ever written, but they will be useless if the documents are not presented when needed or if your representative deviates from following your wishes.
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Anticipating the death of the person you represent, imagine how you would answer the following questions now--and decide if you should change your interaction in any way to be able to improve your self evaluation.
Agree Disagree I treated *** with kindness and affection
Agree Disagree I helped to create a peaceful death for ***
Agree Disagree I respected and supported ***s wishes for EOL care
Agree Disagree I tried to have *** die my way vs. his or her way.
Agree Disagree I feel good when I reflect on my relationship with ***
STEP 5
"There is a heavy burden placed on patients and their families to clearly understand and wisely navigate the system of care, especially when they are facing a serious illness. Despite the growing emphasis on patient-centered care, there is little evidence that new approaches are meeting the needs of those suffering with advance illness and their families trying to provide support."
Coalition to Transform Advanced Care (2014)
BLACK BOX WARNING
To help you bridge the communication gap, this step advises you to discuss your end-of-life care preferences with your healthcare providers and have your wishes documented in your medical record.
Doctors are often reluctant to initiate the necessary discussions for a variety of reasons.
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They may be extremely busy.
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They may be uncomfortable discussing death.
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They may consider patients' deaths as failures.
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They often have difficulty predicting the course of an illness and patients' ultimate deaths.
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They often underestimate the amount of information that patients and their families want (while overestimating their ability to understand the information that is offered).
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They withhold information because they doubt the ability of patients and their representatives to make good decisions based on the information they provide.
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They are afraid that raising the topic will cause their patients to lose hope and become so depressed they withdraw from continuing in treatment.
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They do not have firm guidelines for deciding how much information to offer during the course of a serious illness.
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They may feel constrained by the HIPAA (Health Insurance Portability and Accountability Act) from discussing treatment issues with anyone other than the patient. (See the HIPAA release in More Information)
Problems often arise when the conversations do take place when providers and patients do not speak the same language. This can adversely affect the care that is provided and the way it is perceived. For example when a doctor reveals that the patient has a "stage l tumor", implying that it is treatable, patients might hear "terminal cancer." and refuse procedures than can help. Or when the diagnosis is "stage 4 tumor" which is often terminal, patients may hear a call to action when added uncomfortable and expensive treatments offer little to no discernable benefit. The watchword here is that every patient should be a skeptical, not a hostile consumer of the information offered. Skeptics want to know things like:
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Exactly what is being proposed?
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If it is a test, how would the results influence treatment decisions? And what risks, if any, does the test create?
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If it is a drug or procedure, what are expected short and long-term direct and unwanted (aka "side") effects?
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How long should this recommendation be followed?
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What are the criteria for deciding to continue or discontinue it?
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What would be the probable outcome if the recommendation is refused?
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What alternative methods are available, including their probable effects?
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For example, some complications are associated with adverse interactions between drugs and with continuing to take drugs that have ceased to be effective. (See "Describing" in the "Resources" tab.)
Throughout these discussions it is essential for both providers and patients to carefully define the medical and treatment-related terms they use and to make sure that both are using the words in the same way.
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Keep asking questions.
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Write down the answers.
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Verify that your information is correct.
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Repeat the process until you and your doctor are both sure that you fully understand the message.
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Don't worry about looking foolish; this isn't a job interview or first date.
Therefore it may be your responsibility to introduce the topic of end-of-life care. These conversations are your opportunity to communicate your wishes and get information about your illness and the way in which it is likely to develop. They should be two-way conversations. AARP (http://www.aarp.org/health/healthy-living/info-2016/talk-to-doctor-patient-relationship.html) has offered several useful suggestions for having these conversations. Among others, they suggest that you:
1. Prepare in advance and rehearse information to give and questions (with
follow-up questions) to ask.
Questions you might want to ask about new drugs or procedures.
Ask for best outcome possibilities and the probability they will occur.
Ask about negative outcome possibilities, the probability that they
will occur, and their possible short and long-term consequences.
Discuss the balance between positive and negative possibilities.
Ask if you can view video tapes of the procedure or talk to someone
who has undergone the procedure or followed the drug regimen.
Ask if other interventions might yield a better balance between
positive and negative outcomes.
2. Make a human connection by an ice-breaking friendly comment.
3 Then stay on message because providers are pressed for time.
4. Tell the whole truth, e.g. mention any bad habits that might contribute
to your problem and the extent to which you followed advice regarding
medication and self-management behaviors.
5. Be truthful about what you are willing to do and what you can afford.
6. End by summarizing what you learned and ask if it is accurate.
Two types of advance care planning conversations are possible.
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When you are comparatively healthy, you can discuss your values, goals, and the kind of treatment you would like to receive under various general conditions. In these brief and general conversations, in a few sentences you can tell your providers about your state of mind and lifestyle, both relevant to all stages of illness. You can also deliver a copy of your Living Will so your provider can scan it into your medical record (as in the upper left corner of the Epic record below). Since you will not be suffering from a life-threatening illness at this time, you should not be asked to complete a POLST, MOLST, TOPPP, POST, or similar form (sample below). This form is a physician's order for a particular treatment approach. Your Living Will is sufficient in the event that you are seriously injured in an accident or lose capacity due to a sudden serious illness.
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If you currently suffer from one or more serious illnesses, discussions with your providers should be more focused and longer. They will focus on the expected course of your illness, available intervention options and their probable effects, the wisdom if initiating palliative care, and the criteria used to decide whether to offer, withhold, or withdraw specific procedures. These conversations are meaningful only if providers accurately understand who you are and what you want as stated in your Living Will.
Since your Living Will outlines general guidelines for future treatment, your provider should create a MOELI (Medical Order for End of Life Intervention) or a POLST (Physician Orders for Life Sustaining Treatment). Both can be completed if you have a serious illness or frailty with less than a year to live, The MOELI can be completed if you are 80 or older, while you still have the capacity to make binding treatment requests. The MOELI is also a far more complete record of your preferences that is closely correlated with the choices you made in your Step 3 Advance Directive. For example, it includes the essential third choice (CPR always, DNR, or CPR if you heart stops due to a short term correctable problem) and it includes all of the common end-of-life treatment options. A MOELI or POLST translate your preferences for current care into medical orders that take effect immediately, unlike your advance directive that states your preferences for future care. (See the MOELI tab in the "More Information" section for an explanation of the advantages of the MOELI over the POLST.)
Only you can create a Living Will, but either you or your healthcare representative can request a MOELI or POLST. It must be signed and dated by a physician, advanced registered nurse practitioner (ARNP), or a certified physician's assistant (PA-C). It should be the first item in your medical chart and it should go with you if you are transported between healthcare facilities. It is you providers' responsibility to see that your MOELI or POLST goes with you if your are transferred to a different care facility. You should also have a copy at home to show to 911 first responders, particularly if you do not want full treatment and CPR.
Your Living Will and MOELI or POLST are evolving documents that should be revised to keep pace with any changes in your preferences. It is important to review your Living Will with your providers annually to reaffirm or change it. If a POLST has been entered for you, it should be reviewed your providers at least twice each year to reaffirm or change its content.
If you have a serious or life-threatening illness, it is important to get information about the predicted course of the illness, and the probable benefits and risks of each treatment option. If possible, you may also want to try to obtain information about the cost of each option. Initial decisions should be considered tentative, with both doctor and patient taking time to consider implications and make revisions. This might also include getting a second opinion.
Whether designed to exchange information or create end-of-life care planning documents, these conversations should take the form of shared decision-making. When critical care decisions are being discussed, you will have the right to refuse any procedure that you do not want to undergo, even if your providers try to convince you that there are good reasons to accept it. On the other side, your providers are not ethically obligated to provide a treatment that they deem to be futile, despite the urgency with which you request it. The success of these discussions depends upon the ability of you and your providers to understand each other's perspectives and negotiate successfully.
Surprisingly, as many as half of all critically ill patients never discuss end-of-life decisions with their providers. Even when the conversations do take place, they may be forgotten because doctors often see too many patients each week to remember a great deal about any one of them. They do their best, but many primary care providers have panels of 2000 or more patients, see 20 or more patients per day, and have contacts lasing an average of 15 minutes. Since it is your life and your well-being, it is your responsibility to become a person, not just a patient, for your providers.
You can do this by:
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Completing and making multiple copies of pages 19 and 20 of 6-Steps.
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Giving copies of these pages to your healthcare representative, significant relatives and/or friends who might be present when you can’t speak for yourself, and posting a copy that can be easily found by paramedics if they respond to a 911 call. (First Responders must act very quickly in emergencies and their efforts can be delayed with fatal consequences if they don’t immediately know what ails you, what you want, and what you have been doing to manage your illness.)
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Bring a copy of these pages to every visit with your healthcare providers. Some will glance at it and return it to you, but many will keep it since it includes your agreement to hold them blameless if they meet community standards in honoring your wishes. Even if your provider keeps a copy, bring another because you can never be certain that the last one will be found.
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Fine-tune the conversations by telling your doctor whether you want to hear only encouraging messages or would like to hear the unvarnished truth. I advise the latter because it allows you to make more informed decisions and manage other aspects of your life when the end is in sight. You can also ask your providers to direct you to sources of information about your illness and possible treatments. The more you know about options, the more wisely you can choose between them. And the more your doctors tell you, the closer he or she complies with the Montgomery Ruling, currently law in England and soon to be enacted in the US. This law requires doctors to inform patients of "any material risks involved in any recommended treatment and any reasonable alternatives to any variant treatments." (Goldle, BMJ 2015;350h1:1534)
BLACK BOX WARNING
Summary Guide to Vital Conversations
There are biases on both sides of doctor-patient conversations
It is up to you to decide how direct and honest you would like your doctor to be. Many providers are uncomfortable with telling patients the truth about their conditions. There are times when the course of an illness is very uncertain so there are no truths to be told. But often doctors have a good idea of what to expect and are reluctant to deliver the bad news. They are afraid that learning the truth will make their patients feel bad and worsen their conditions. Usually, though, Just the opposite is true. Patients often know the realities: their bodies don’t keep secrets. When doctors don’t tell the truth, patients may begin to lose faith in their judgment and feel that they must face dying alone. And when denied the truth patients lose the opportunity to have the final conversations that create the meaning of their final hours.
If you want straight talk, you should ask for it. And if you get it, you should be careful not to fall into a common trap. Be careful not to reject information that you don’t like and accept only the information that you do. And don't pretend to understand if you are in doubt: Ask,
Write, Verify, and Repeat until you have it right. A wise treatment decision requires you to thoughtfully consider the pros and cons of every option.
As final preparation, it is often useful to role play interactions between your healthcare representative and your doctor and various family members. Your representative should ask your doctor to please arrange a quiet, private place and schedule a time to discuss the choices to be made in planning how to care for you. How would you like your representative to respond if your doctor
appears to feel uncomfortable about such a personal and intimate conversation or makes statements like any of the following:
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"If it were my mother, I would choose to do the following..."
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"Are you sure that the patient's wishes haven't changed since the documents were completed?"
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"I understand what the patient wants but I am not willing to use that approach?"
And if another family member who participates in the discussion says
“I know that sis told you she wants limited treatment but I think…..?"
Repeat the role plays until you representative feels comfortable honoring your requests.
To learn more about the cost of treatment, see the More Information tab
Congratulations!! At this point you should have completed your Living Will.
The 6th Step will suggest several things to make sure your voice is heard and not forgotten.
STEP 6
The suggestions offered here are the forgotten stepchildren in advance care planning. Unfortunately, ignoring them can negate the benefits of all the effort that you put into creating your Living Will.
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Destroy any copies of older advance directives that you completed in the past.
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Make multiple copies of your new Living Will. Many people have a single copy in their safe deposit boxes guaranteeing it will not be available in an emergency.
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Distribute copies of your Living Will to everyone who will share in caring for you at the end of your life to spare your healthcare representative the need to explain what you want.
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Tie up as many of the loose ends of your life as possible. For example, complete a last will and testament and make sure that you frequently remind loved ones how much they have meant to you. You never know when the opportunity to communicate will be lost, and no loving message should ever go unvoiced.