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The Extended values history form: suggestions for use

The form was developed at the Center for Health Law and Ethics, University of New Mexico School of Law, 1117 Stanford NE, Albuquerque, NM 87131 USA. It may be used to supplement a Living Will, if you have one. Also, the Extended Values History Form is not copyrighted, and you are encouraged to make additional copies for friends and relatives to use. It is called an extended values history form to distinguish it from a short, scenario-based values history form.

WHY A VALUES HISTORY FORM?

A Values History Form recognizes that medical decisions we make for ourselves are based on those beliefs, preferences and values that matter most to us: How do we feel about our overall health? What personal relationships in our lives are important to us? How do we feel about independence or dependence? About pain, illness, dying and death? What are our goals for the future?

A discussion of these and other values can provide important information for those who might, in the future, have to make medical decisions for us when we are no longer able to do so.

Furthermore, a discussion of the questions asked on the Values History Form can provide a solid basis for families, friends, physicians and others when making such medical decisions. By talking about these issues ahead of time, family disagreements may be minimized. And when such decisions do need to be made, the burden of responsibility may be lessened because others feel confident of your wishes.

HOW DO I FILL OUT THE VALUES HISTORY FORM?

There are a number of ways in which you might begin to answer these questions. Perhaps you would like to write out some of your thoughts before you talk with anyone else. Or you might ask family and friends to come together and talk about your - and their - responses to the questions.

Often, simply giving copies of the Extended Values History Form to others is enough to get people talking about a subject that, for many of us, is difficult and painful to consider.

The most important thing to remember is that it is easier to talk about these issues BEFORE a medical crisis occurs. Feel free to add questions and comments of your own.

WHAT SHOULD I DO WITH MY COMPLETED EXTENDED VALUES HISTORY FORM?

Make sure that all those who might be involved in your health care are aware of you wishes: family, friends, physicians and other health care providers, your Pastor, your lawyer. If appropriate, give written copies to these people. But remember, each of us continues to grow and change, and so the Extended Values History Form should be discussed and updated fairly regularly.

Consider attaching a copy of it to your Living Will, if you have one, or filing it with important medical papers.

WHO SHOULD CONSIDER COMPLETING THIS VALUES HISTORY FORM?

Everyone. While we often focus on older people, it is just as important that younger people discuss these issues and make their wishes known. Some of the most difficult medical decisions must be made on behalf of younger patients. If they had talked with families and friends, decision makers could feel they were following the patient's wishes.

We hope this Extended Values History Form is of help to you, your families and friends. Many people have commented that it is important to reflect, not so much on How I want to die, but rather on How I want to LIVE until I die.

Further evidence on the Values History - A Summary of Points Submitted by Chris Docker to the BMA Living Wills Code of Practice Committee 11 January 1995

(Skip this section if you want to go straight to making a values history)
  • 1. Values history directives, whether dialogue, scenario, or story-based, provide a valuable format for discussion of withdrawing/withholding of life-sustaining-treatments, between doctors and patients (and, where appropriate, significant others). They may be used to decide future treatment options during incompetence, or, by showing underlying core values, supplement an advance medical treatment-decision directive.
  • 2. Values histories, unlike medicalized advance directives, only ask a patient to express views, are seen as less threatening than asking a healthy patient to make advance medical decisions about life and death, and are less intrusive on a doctor's skill in making appropriate clinical decisions. Values histories get away from the &quotfear atmosphere" that can be engendered by traditional living wills - they do not cause a doctor to be feel threatened by litigation, nor do they have the same potential to make a patient worry about dying if the health-care worker (rather than the patient) is the one to initiate discussion of the document (which it may be eminently desirable for the health care worker so to do). They are thus often a more acceptable document than the traditional advance directive.
  • 3. The values history gives more realistic and specific guidance to next of kin or a significant other than traditional advance directives or casual conversations.
  • 4. If a patient expresses an interest in making an advance directive, the health care provider should make available or encourage completion of a values history.
  • 5. If the patient presents with a medicalized advance directive, the doctor should invite the patient to complete a values history additionally, or cover a similar area as the values history form by means of dialogue with the patient.
  • 6. Some patients may wish to make a Values History Directive only.
  • 7. Values histories are useful in a wide range of situations where the doctor needs to understand the patient as a person, and could routinely be offered on registration with a new G.P. In today's hard-pressed National Health Service, they help to provide personal knowledge about a patient that a doctor in times past would have acquired in a more leisurely fashion.
  • 8. Compared to traditional, medicalized advance directives, values histories are less subject to the objections of not being clearly established at the time of their writing, or applicable in the circumstances that subsequently arise: they rely neither on an understanding/misunderstanding of the medical treatments proposed, nor on speculative attempts to hypothesize about future medical conditions. They are thus often seen as a more desirable form of advance directive.
  • 9. As the values history makes minimal use of technical or complex language, it is less liable to marginalize persons from a poor educational/socio-economic or persons for whom English is not the first language. (Unlike traditional living wills which, in American studies, have shown to be used and favoured more especially by white, middle class people.)
  • 10. Values histories, as well as being more patient-centred and geared to autonomous expression and decision making, are more clinically useful than purely medicalized advance directives. They can help to validate preferences about treatment and also indicate appropriate courses of action that were not, or could not, be covered by traditional advance directives alone. They are a useful clinical tool to elicit values relating to chronic as well as critical medical care.
  • 11. Values histories, it can be argued, represent a potentially more enduring expression of preferences to determine future health care choices than do traditional advance directives. Preferences for complex alternatives that have variable probabilities for outcome in the future are difficult to assess for durability (although limited studies suggest some stability.) Core values may be more enduring than decisions about how to apply those values.
  • 12. Values histories are more in keeping with developments in law and ethics that emphasise patient autonomy. They present doctors with an opportunity to be pro-active in leading the way in good medical care, instead of merely accommodating existing law. The values history gives a picture of the patient as an individual person rather than as a set of medical paradigms. The traditional advance directive is based on medical diagnosis- procedures-outcomes and risks failing to do this. A doctor may need information about a patient's lifestyle and attitudes in order to discharge the responsibility of making medical decisions that that patient would have made in a particular situation if competent, or even to make decisions about disclosure, or recommendations, for a competent patient.
  • 13. A recently completed study (Pearlman, USA) has suggested that although there is a strong relationship between patients' advance treatment preferences and envisaged health outcomes, this relationship is not strong enough to make substitution possible. Treatment preferences are not a substitute for eliciting what states of health a patient would find acceptable. It is very desirable, therefore, that advance directives, if used, should be supplemented with a values history approach, written or verbal, or a vlaues history incorporated in the advance directive.

  • Selected References

  • Doukas D, McCullough L, "The Values History - The Evaluation of the Patient's Values and Advance Directives", Journal of Family Practice 1991; 32(2)145-150, p.145: "The validity of the Values History is based on a basic ethical consideration: the Values History enhances the autonomy of the patient in a way that present advance directives do not, by clarifying for the health care team the patient's expresses values underlying decisions to be carried out when decision making by the patienbt is no longer possible. One possible benefit of such an evaluation is to help physicians and institutions manage more reliable the uncertainties that surround advance directives."
  • Emanuel E, Emanuel L, &quotFour Models of the Physician-Patient Relationship", Journal of the American Medical Association 1992; 267(16)2221-2226, p.2225.: &quotFreedom and control over medical decisions alone do not constitute patient autonomy. Autonomy requires that individuals critically assess their own values and preferences; determine whether they are desirable; affirm, upon reflection, these values as ones that should justify their actions; and then be free to initiate action to realize the values."
  • McLean S, paper given to International College of Surgeons, London November 14th 1994: &quotWhere the directive is indeed a negative declaration, the doctor would certainly be frustrated by not being able to intervene, but this presumes that the nature of the advance directive is only clinical. In fact some directives now address themselves to values histories rather than clinical condition and this would be my preferred model. The difference is that the individual describes not which medical conditions he or she would not want to live with, but rather the circumstances in which continued life is not preferable to them - even if something could be done medically."
  • Singer P et al, &quotAdvance Directives: Are they an Advance?" Canadian Medical Association Journal 1992; 146(2):127-134, p.129: &quotSince values and preferences represent fundamentally different, but complementary, approaches, instruction directives should contain both these components."
  • Gibson J, &quotReflecting on Values", Ohio State Law Journal 1990; 51(2):451- 454: "...whereas [such] formal directives ask for a series of medical conclusions, the Values History form targets value premises that are not medical in nature but are always considered (consciously or not) when making medical decisions. Other advance directives require one to anticipate medical conditions that might arise and to decide in advance what medical treatment one would choose or not choose. No mention is made about who the individual is now, what matters to the individual, or why the individual has made the choices he has - in short, no attention is paid to the only information that is real and not hypothetical. These insights gathered over the past several years may account for the unexpected appeal of the Values History form, especially to persons whose job requires them to encourage others to execute advance directives, such as health care professionals, administrators, pastors, and counselors."
  • Pearlman R, Cole W, Patrick D, Starks H, Cain K, &quotAdvance Care Planning: Eliciting Patient Preferences for Life-Sustaining Treatment", Pt.Educ & Counseling, In Press: &quotAfter a brief introduction to the topic of ACP [advance care planning] and advance directives (often using familiar language such as &quotliving wills"), the health care provider should inquire about the patient's understanding of these terms and the potential value in his or her health care. After laying this groundwork, clarification of a patient's preferences about health care should ensue."
  • Kielstein R, Sass H, &quotUsing Stories to Assess Values and Establish Medical Directives", Kennedy Institute of Ethics Journal 1993, 3(3):303-325, p.313: &quotMany clinicians, lawyers and ethicists believe that traditional advance directive forms are largely ineffective in providing sufficient information on values, preferences, and guidance for medical intervention. Story-based value assessments and directives and other narrative methods that employ the development, evaluation, and integration of stories into a person's own life story are an alternative to traditional directives. Since story-based assesments and directives do not provide ready- made recipes for medical intervention, they challenge good clinical practice to integrate value assessment with medical assessment and improved physician-patient interaction into on-going stories of cure and care." (The article examines different types of values histories, their evolution, and generally favours them over traditional advance directives.)
  • Schneiderman L, Pearlman R, Kaplan R, Anderson J, Rosenberg E, &quotRelationship of General Advance Directive Instructions To Specific Life-Sustaining Treatment Preferences in Patients with Serious Illness", Archives of Internal Medicine 1992; 152:2114-2122, p.2120 "...we suggest that advance directive instruments should be developed that enable patients to express their wishes in terms of quality of life under varying clinical states."
  • Dickens B, &quotA Response to the Papers of Molloy and Colleagues (Canada) and Cranford (United States) on Advance Directives", Humane Medicine 1993; 9(1):78-84, p.80: &quotThe application of these theoretical responses within hypothetical scenarios to the actual events that occur is a matter of conjecture and speculation. This raises serious questions about the value of executing directives that specify great detail. Indeed, the more detailed an advance directive is, the more likely it is to vary from events that actually occur. It may be of more value for individuals to express themselves in their own terms, not in the medical jargon that health professionals use to write documents, and to address their personal goals, hopes and fears."
  • Hoffman M, &quotUse of Advance Directives: A Social Work Perspective on the Myth Versus the Reality", Death Studies 1994; 18:229-241, p.229 [on living wills and related documents:] &quotAs important as such documents may become in the future, perhaps even more important will be the process individuals go through defining what quality of life means to them by specifying their values and beliefs to their families and physicians before they face a crisis situation."
  • Pearlman R, &quotAre We Asking the Right Questions", Hastings Center Report Special Supplement 1994; 24(6):S24-S28, p.S24: &quotDo advance forms and discussions provide sufficient information for valid representation of preferences? Does the written record communicate meaningful preferences that are applicable to future clinical situations? and, Does availability of advance directives inhibit communication with patients before the onset of mental incapacity? These questions seem more germane than questions about the effect of advance directives on perceived satisfaction with care and health costs, or clinicians' adherence to the preferences expressed in advance directives. There is also the need to ascertain whether the original objectives for advance directives match the desires of the individuals they were intended to benefit. Many patients desire advance directives to ward off untoward outcomes of medical technology. With these individuals it may be desirable simply to elicit general goals of care under certain circumstances. Other patients may want to provide more detailed infrormation, such as treatment preferences. ... one important question is which type of advance directive (written, verbal, proxy, instruction, values history, etc, best helps a particular patient communicate his or her treatment preferences."

    The Extended Values History

    A form to assist you in making health care choices in accordance with your values

    It is important that your medical treatment be your choice. The purpose of this form is to assist you in thinking about and writing down what is important to you about your health. If you should at some time become unable to make health care decisions, this form may help others make a decision for you in accordance with your values.

    The main section of this form provides an opportunity for you to discuss your values, wishes, and preferences in a number of different areas, such as your personal relationships, your overall attitude towards life, and your thoughts about illness. Towards the end of the form is a space for indicating whether you have completed an Advance Directive (Living Will) and where such documents may be found.

    The Extended Values History Form is not copyrighted. You are encouraged to make additional copies for friends and relatives to use.

    Signature:

    D.O.B.: Today's Date:

    If someone has assisted you in completing this form, please fill in his or her name, address, and relationship to you:

    Name:

    Address:

    Relationship:

    OVERALL ATTITUDE TOWARDS LIFE AND HEALTH

    What would you like to say to someone reading this document about your overall attitude towards life?

    What goals do you have for the future?

    How satisfied are you with what you have achieved in your life?

    What, for you, makes life worth living?

    What do you fear most? What frightens or upsets you?

    What activities do you enjoy (eg hobbies, watching TV)?

    How would you describe your current state of health?

    If you currently have any health problems or disabilities, how do they affect: You? Your family? Your work? Your ability to function?

    If you have any health problems or disabilities, how do you feel about them?

    What would you like others (family, friends, doctors) to know about this?

    Do you have difficulty in getting through the day with activities such as: eating? preparing food? sleeping? dressing and bathing? etc.

    What would you like to say to someone reading this document about your general health?

    PERSONAL RELATIONSHIPS

    What role do family and friends play in your life?

    How do you expect friends, family and others to support your decisions regarding medical treatment you may need now or in the future?

    Have you made any arrangements for family or friends to assist in making medical treatment decisions on your behalf? If so, who has agreed to assist in making decisions for you and in what circumstances?

    What general comments would you like to make about the personal relationships in your life?

    THOUGHTS ABOUT INDEPENDENCE AND SELF-SUFFICIENCY

    How does independence or dependence affect your life?

    If you were to experience decreased physical and mental abilities, how would that affect your attitude toward independence and self-sufficiency?

    If your current physical or mental health gets worse, how would you feel?

    LIVING ENVIRONMENT

    Have you lived alone or with others over the last 10 years?

    How comfortable have you been in your surroundings?

    How might illness, disability or age affect this?

    What general comments would you like to make about your surroundings?

    RELIGIOUS BACKGROUND AND BELIEFS

    What is your spiritual/religious background?

    How do your beliefs affect your feelings towards serious, chronic or terminal illness?

    How does your faith community, church or synagogue support you?

    What general comments would you like to make about your beliefs?

    RELATIONSHIPS WITH DOCTORS AND OTHER HEALTH CAREGIVERS

    How do you relate to your doctors? Please comment on: trust; decision making; time for satisfactory communication; respectful treatment.

    How do you feel about other caregivers, including nurses, therapists, chaplains, social orkers etc?

    What else would you like to say about doctors and other caregivers?

    THOUGHTS ABOUT ILLNESS, DYING AND DEATH

    What general comments would you like to make about illness, dying and death?

    What will be important to you when you are dying (eg, physical comfort, no pain, family members present etc)?

    Where would you prefer to die?

    How do you feel about the use of life-sustaining measures if you were: suffering from irreversible chronic illness (eg Alzheimer's disease)? terminally ill? in a permanent coma?

    What general comments would you like to make about medical treatment?

    FINANCES

    What general comments would you like to make about your finances and any costs connected with your health care?

    What are your feelings about having enough money to provide for your care?

    FUNERAL PLANS

    What general comments would you like to make about your funeral and burial or cremation?

    Have you made your funeral arrangements? If so, with whom?

    OPTIONAL QUESTIONS

    How would you like your obituary (announcement of your death) to read?

    Write yourself a brief eulogy (a statement about yourself to be read at your funeral).

    What would you like to say to someone reading this Extended Values History Form?

    HEALTH CARE DECISION DOCUMENTS

    Have you signed a Living Will?

    Yes No

    Where can it be found?

    Name:

    Address:

    Phone:

    Copyright © 1995 HTML markup Chris Docker. The values history form may be freely reproduced for personal use. Acknowledgement should be made if it is reproduced in any form. Print the form and adapt it for your own use, but bear in mind it should be printed in such a way that it is easy to read, eye-catching, and durable. A suitable printed version is also available as one of the items in the Exit Living WIll Pack.

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