Archive for the ‘
Advance Care Planning ’ Category
For Immediate Release:
National Healthcare Decisions Day Set for April 16, 2008:
October 17, 2007
Numerous National Organizations Already Committed to Participate
(NHPCO, Alexandria, Va) – April 16, 2008 will be the inaugural National Healthcare Decisions
Day. On this day, throughout the country, healthcare providers, professionals, chaplains,
attorneys, and others will participate in a massive effort to highlight the importance of advance
healthcare decision-making. To facilitate this process, initiative organizers will provide clear,
concise, and consistent information and tools for the public to execute written advance directives
(healthcare power of attorney and/or living will) in accordance with their applicable state laws.
These resources will be available at: www.nationalhealthcaredecisionsday.org
Although several states have engaged in advance directives awareness events and numerous
organizations have devoted substantial time and money to improving education about advance
healthcare planning, only a small minority of Americans have executed an advance directive.
National Healthcare Decisions Day seeks to address this issue by focusing attention on advance
healthcare planning from a variety of directions simultaneous.
"As a result of National Healthcare Decisions Day, many more Americans can be expected to
have thoughtful conversations about their healthcare decisions and complete reliable advance
directives to make their wishes known," said Nathan A. Kottkamp, chair of the National
Healthcare Decision Day initiative. "Fewer families and healthcare providers will have to
struggle with making difficult healthcare decisions in the absence of guidance from the patient;
and healthcare providers and facilities will be better equipped to address advance healthcare
planning issues before a crisis and be better able to honor patient wishes when the time comes to
The following national organizations have already committed to participating in this event by
encouraging their members and chapters to engage in various education initiatives on National
Healthcare Decisions Day:
- Administration on Aging
- Aging with Dignity
- American Association of Critical-Care Nurses
- American Association of Homes and Services for the Aging
- American Health Care Association
- American Health Decisions
- American Health Lawyers Association
- American Hospital Association
- American Medical Directors Association
- American Nurses Association
- Association of Professional Chaplains
- American Society of Directors of Volunteer Services
- Catholic Health Association of the United States
- Center for Medicare Advocacy
- Center for Practical Bioethics
- Center for Social Gerontology
- Duke Institute on Care at the End of Life
- Federation of American Hospitals
- Financial Planning Association
- McGuireWoods, LLP
- National Academy of Elder Law Attorneys
- National Association of Catholic Chaplains
- National Association of Social Workers
- National Association on Directors of Nursing Administration in Long Term Care
- National Hospice and Palliative Care Organization
- National POLST Paradigm Initiative Task Force
- The Hastings Center
Coordinators are being recruited to develop networks in each state to encourage and support
local activities and outreach. Organizations and coalitions interesting in participating are
encouraged to register at the NHDD Web site.
For more information on this initiative, please visit www.nationalhealthcaredecisionsday.org,
email firstname.lastname@example.org, or call 800/658-8898.
Media Contact: Jon Radulovic, National Hospice and Palliative Care Organization,
Ph: 703-837-3139, email@example.com.
Editor's Note: Nathan A. Kottkamp, project chair is available for interviews. The National
Hospice and Palliative Care Organization is providing administrative and communications
support for the NHDD initiative.
||Religious Beliefs and Advance Directives
||Changes as We Age
||Erickson’s Theory of Psychosocial Development and Late Adulthood Decision Making
||How Social Workers Help
Medical evidence has shown us that that people are living longer with chronic illnesses during the 21st century than they did in the recent past. Advances in medical technology have allowed health care providers to sustain a person's life artificially. Most of us have heard of news stories of people who have remained in a coma for many years kept alive through medical intervention.
Historically, the act of dying is seen as solely a medical event. However, there is now a movement to incorporate the psychosocial, spiritual, and personal aspects of dying: advance directive planning.
An advance directive is a legal document that puts a person's wishes about medical treatments in writing. Advance directives generally fall into three categories: living will, power of attorney and health care proxy.
These documents are directions for a person’s care that they can have in place in advance of perhaps becoming incapacitated by illness or injury when they can’t make their wishes know to their physician and family. Although any adult create an advance directive for themselves, most adults who have these documents are age 65 and older.
Advance directives also allow individuals to make important medical decisions, for instance artificial nutrition and hydration, etc. According to the Patient Self-Determination Act, passed in December 1991, health care providers receiving Medicare and Medicaid funds must tell patients of their right to make these decisions - in advance – if they become medically ill and/or unable to speak for themselves.
Religious Beliefs and Advance Directives
Studies have shown that religion is a major influence in an individual's view of life, death and the healthcare system. One study focused on the elderly and how the primary factor was based on their own life experiences which were influenced by their spiritual beliefs.
End-of-life decisions can affect a person's spirituality since their quality of life may be an important factor in their spiritual well-being. Other factors that may determine how a person feels about their end of life include the impact of where they have grown up and live, personal factors, their education, their knowledge of advance directives, their fear of death, and the amount of social support they have. Studies demonstrate that people become more religious as they age, and some people go back to their religion when faced with death. It is felt that religion promotes emotional well being later in life.
End-of-life decisions can also affect a person’s physical, emotional, and social development. Elders have had to cope with losses throughout life. Many concerns that the elderly have tend to be "psychological in nature" such as a fear of requiring 24-hour care or institutionalization due to failing health. These psychological affects can lead to depression.
Changes As We Age
During later life changes occur such as becoming frail and medically unstable. This is when advance planning decisions can be made to determine what life sustaining measures will or will not be taken to sustain life.
Social changes affect a person's decision. If they move, for example, to be closer to family, they will need to make new friends in the new environment, to cope with the loss of old friends, and to cope with the changing roles within the family dynamics as one becomes older.
Family members most likely will be the decision makers for the patient. It is important for families to inform healthcare providers of the patient's beliefs and values, as well as the family needs, expectations and concerns. The older adults have to deal with being a lower status in society and possible threat of ageism, as well as retirement and lower income.
Erickson’s Theory of Psychosocial Development and Late Adulthood Decision Making
The renowned psychiatrist Erik Erikson based his concept of a complete life cycle on Freud's theory. Erikson took a "psychosocial approach to human development," paying specific attention to the individual and their environment, as well as human services available. The emphasis was on the "person in (the) environment".
Erikson's view of life was explained through eight different life stages. A person faces a crisis and progresses through to the next stage whether or not they resolved that crisis. Erikson reported that the resolution of each life crisis is an ideal, but that does not mean it is always a reality. He defined the late adulthood stage as age 65 until death. According to Erickson, a persons' positive outlook on wisdom is important and the conflict within a person is between (ego) integrity and despair. This is when a person tends to reflect on and accept one's own life.
Some people are able think of aging as a natural progression in their life and accept death as the â€˜completion of life.' To the ability that a person can resolve a crisis in the earlier stages is an indication of their ability to resolve their crises within later stages.
Others may not be able to cope with the end of their life successfully and can become very upset. They can experience a lot of regrets and suffer with deep despair over their life experiences and events they perceive as failures. They may struggle with the thought of the end of their life, and what their life means. On the other hand, some people might feel that they were an intricate part of society and are able to leave this world with the belief that their point of view was always the correct one.
Near the end of life, a person can be mentally and physically incapacitated. In order to make sure they have a "voice" during this time of important decisions, a policy and law was developed to educate and encourage people to document their wishes prior to a devastating illness. It is an individual's right to make end of life decisions and to determine what medical treatment they want or do not want.
How Social Workers Help
Social workers carry a responsibility to educate and inform patients about advance directives in order to explain their meaning. It is vital for social workers to enable patients to make informed decisions and therefore good communication skills are vital. Social workers need to be sensitive to a person's vulnerability that might be a result of poverty, bias, oppression or prejudice. We as social workers need to identify the issue at hand and work toward alleviating burdens when possible. Social workers are required to ensure that policies and practices reflect true choice and do not discriminate against traditionally oppressed groups such as people of color, women, disabled, gays and lesbians. Social workers are ethically bound to challenge injustices, and respect the dignity and value of the person.
The NASW code of Ethics, 2000, indicates social workers have a responsibility to assist clients in asserting their rights to self determination and informed consent. NASW's position suggests that for the terminally ill population, the ethical issue of the right to self determination outweighs the social worker responsibility to avoid doing harm. In June 2003, after social workers continued studying of end of life decision, NASW implemented the "End of Life Practice" policy. It states the social worker has the responsibility to assist clients and families in end of life decisions, and if for personal reasons the social worker is unable to, the social worker has the responsibility to refer the client and family to another competent professional.
Studies demonstrate that poor and underinsured persons often receive substandard healthcare which may result in a higher mortality rate. Poverty is different for each race and ethnic group; minorities are more likely to be disproportionately harmed by this issue. If the person is publicly funded, the medical doctor is more likely to write a do-not-resuscitate order.
Due to advances in healthcare, medical treatment options have become complicated. Some decisions made which intended to alleviate pain may hasten death. For others, actions being taken can lead directly to their death, such as the removal of artificial means (feeding tubes or respirator).
On a macro level, as healthcare, health policy and social contexts continue to progress, social workers need to continue to educate and inform people of end-of-life policies and practices. On a micro level, social workers need to continue to encourage people to make informed decisions and understand what their end of life care entails in all aspects: through the total body of health and illnesses by including the biopsychosocial and cultural aspects. As social workers continue to serve devalued groups (elderly, poor, disabled), they need to continue to advocate for more equitable social policies regarding end of life decisions and for better access to resources.
We, as a society, have to help preserve the dignity and respect that our older generations once had and deserve. They preserve our history. They are our future. This generation possesses a knowledge and wisdom that the younger generation can benefit from by learning.
It may seem as though there is never a "good time" to talk about death and dying. Oftentimes loved ones are uncomfortable discussing the topic – particularly if they are relatively healthy. Although these conversations are often difficult to have, they are vitally important. We need not wait for a tragedy before anticipating what rational decisions will need to be made in time of crisis. We must have the conversation before the crisis.
With so much in the news about our aging population and end-of-life care, people are beginning to value a good death as much as they do a long life. While some families are able to tackle the issues that arise from terminal disease â€¦ others cannot even think about what will happen to their loved one. Talking before a crisis can help you and your loved ones prepare for any difficult decisions related to care near the end of life.
Most people have strong ideas about the ways they wish to face the death, yet often, their loved ones or their physicians do not know these choices. Too often, the conversations don't take place until there is no time left for honest discussion, reflection and planning. If you can begin to talk about death when people are healthy, you will have made a significant contribution to your family and discover important information for yourself.
While conversations about end-of-life choices can be difficult to begin, it is vital to communicate about these issues before a crisis occurs. It is important to promote conversation about values and preferences regarding illness, medicine and dying, and to help your loved one decide on who should be a surrogate decision maker if he or she cannot decide or speak for him or herself.
You may meet with reluctance to starting the planning process. You cannot make someone do what he or she is not ready or willing to do, but you can plant the seeds by pointing out that there are real advantages to early advance planning and potential dire consequences to putting off such planning.
Communication is the single most important step in advance care planning. When a loved one communicates their wishes ahead of time, it decreases the chance of future conflict, decreases the potential for ethical dilemmas and takes the burden off the family. The sense of control and peace of mind that this process fosters in the individual and the reduction of anxiety of the surrogate decision maker are important benefits.
Look for hidden cues: â€¦ some people will initiate the discussion by asking questions about end-of-life treatments, or sending cues that they are ready to discuss end –of-life care. People who discuss the death of a friend or relative, wanting to die, or who are asking questions about hospice care may be attempting to open a dialogue about their own end-of-life treatment.
Personal experience, current events and art and culture can be trigger points for conversations. If you want to start the conversation â€¦think about some of the issues and then watch for opportunity triggers:
- Death of a friend or colleague
- Newspaper articles about illness/funerals
- Movies/TV shows
- Dramatic Plays
- Family occasions
- Magazines & Books
Sometimes sharing your own personal concerns, values, spiritual beliefs or views about what makes life worth living can be a helpful conversation starter. Communicating includes understanding hopes and fears around illness and dying. Encourage the conversation through open-ended questions or empathetic responses when inquiring. Conversations about end-of-life issues are emotionally charged. Paying attention to the feelings associated with the content of the conversation, is key to resolving communication difficulties.
Advance care planning and decision-making can make a critical difference in the lives of both patients and caregivers, either in emergency situations or when facing end-of-life situations. Advance care planning aims at being better prepared for unknown dilemmas ahead.
Advance care planning can be guided by Advance directives. Advance directive is a general term used to describe two types of documents, living wills and medical powers of attorney. Living Wills (sometimes called medical directives) are written instructions for care in the event that a person is not able to make medical decisions for him or herself. A medical power of attorney (sometimes called a health care power of attorney) is a document that appoints a particular person (health care proxy/agent or surrogate) to make health care decisions for a patient who is unable to do so for him-or herself.
Although Advance directive policies are determined primarily at the state level, in 1991, Congress enacted the Patient Self –Determination Act (PSDA). This act requires that all health care facilities receiving Medicare or Medicaid reimbursements must inform patients of their rights to make choices about the treatment they receive and to prepare advance directives. Advance directives are not only focused on what treatments one does not want â€¦ they are equally applicable and viable to indicate all of the treatments that one does want.
Over the last 15 years, a body of research has developed around the question of whether advance directives really work – do they have impact on the way decisions are made or carried out? Two recent comprehensive literature reviews offer key insights regarding advance care planning:
- Most people never complete an advance directive;
- Advance care planning has to reflect changing preferences and circumstances; patient's preferences change over the course of their illness.
- When clinicians and families understand and agree with a patient's preferences and prognosis, patient's are more likely to experience their preferred outcomes;
- Physical and psychosocial support for patients and their families is needed and can improve communication and decision-making among clinicians, patients and families;
- Often, when an advance directive has been completed, health care providers don't know about it, and even if providers know an advance directive exists, it is not in the medical record where it is needed.
Despite the mixed reviews, advance directives remain an important legal tool for persons to state their preferences and name a surrogate decision maker, in case they become mentally incapacitated later in life.
It is critical to keep in mind that a living will, advance directive and health care planning are not guarantees that your wishes will be followed. However, without them the chances are greater that your wishes will not be known or followed.
Advance Directives are the best tools we have at this point in our society and even though they require considerable work, it will be well worth it if it can save you and your family anguish. Even more important is to appoint a health care surrogate to speak for you if/when you are incapacitated.
Websites that offer advance directives are readily available in an Internet search. Most state Attorney General websites offer free downloadable forms. You can find links to them through the National Association of Attorney's General: http://www.naag.org/issues/issue-endoflife.php.
It is not within your power to overcome all the barriers of the health care system that hinder the proper execution of the dying persons wishes, but you have an opportunity to help loved ones overcome the personal barriers that prevent them from completing advance directives.
It is hard to face losing a loved one – especially during a long steady decline of a disease or the frailty of old age. If we start planning for illness before it occurs we will/can take some stigma away from how we choose to live with the disease.
Always difficult, the end-of-life can be amazingly rich, filled with learning, insight and love .. possible to the last breatheâ€¦ Talking before the crisis makes a rich and meaningful ending more likely.
Appoint Person to Handle Health Care Decisions
There may come a time when, due to a health crisis resulting in loss of mental capacity, you won’t be able to tell others the type of medical care you'd like to receive.
Advance directives are documents that state how you want to be cared for if you are unable to make or express your decisions. These documents also appoint the go-to person you want to handle important health care decisions for you.
Answering questions about this process is Margaret Meyer, director of M. D. Anderson's Department of Social Work, and Marty Smith, chief of the institution's Clinical Ethics Service. Meyer is a licensed clinical social worker who has helped many families navigate the advance directive waters since their onset in the early 1990s. Since 1987, Smith has functioned as a full-time clinical ethicist, acting as a consultant to doctors, patients and families making end-of-life decisions.
Information presented here is for educational purposes and isn't intended to provide specific medical or legal advice.
What should I consider in doing advance care planning?
Think about your values. Is it important to you that:
- All options for treatment are considered?
- Your religious beliefs are honored?
- You have quality time for yourself and loved ones?
Then, think about how you wish to live. Is it important to you to:
- Be free of pain?
- Be able to take care of yourself?
- Avoid life-prolonging measures that affect quality of life?
What are the important aspects of advance care planning?
- Thinking about your preferences
- Communicating those preferences to:
- Your family
- Those who are important to you
- Your health care professionals
- Documenting those preferences in writing
How can I plan in advance for my care?
Advance directives vary from state to state. In Texas, there are three kinds:
- Medical power of attorney
- Living will (directive to physicians and family or surrogates)
- Out-of-hospital do-not-resuscitate order
What is a medical power of attorney and how does it work?
If you complete only one document, this should be it. But it shouldn't be confused with a regular power of attorney. A medical power of attorney is specific to your health care. It's a legal document in which you give someone (your agent) authority to make health care decisions when you're no longer capable of making them.
Your agent will have the authority to make all health care decisions for you or, if you prefer, to follow a more limited set of instructions that you can specify in the document. A medical power of attorney takes precedence over all documents related to health care decision-making.
What is a living will and how does it work?
A living will shouldn't be confused with a regular will. A living will helps communicate your wishes about specific types of life-sustaining medical care, but it takes effect only when you're in the terminal or irreversible phase of illness or injury. If you sign a living will, talk about it with your doctor and ask that a copy be made part of your medical record.
What is an out-of-hospital do not resuscitate order?
While most states have medical powers of attorney and living wills, not all have this form that is signed by a physician and allows a patient to refuse cardiopulmonary resuscitation (CPR) when outside the hospital. If you don't have an out-of-hospital do not resuscitate order (DNR), health care providers, such as ambulance personnel, will do everything medically possible to start your heart and help you breathe.
Where can I find help to complete these forms?
M. D. Anderson's Department of Social Work is available to counsel M. D. Anderson patients about advance directives at (713) 792-6195. Information also is available on its website. If you don't live in Texas, you can find information at the U.S. Living Will Registry website.
Who substantiates these documents?
You don’t need a lawyer, but two witnesses are necessary for all advance directives (under Texas law). These witnesses can't have a conflict of interest in whether you live or die or your medical condition. In other words, people who are related to you by blood or marriage, the beneficiary of your regular will or your physician can't witness these documents.
What happens if I don't have any advance directives?
If you're unable to express or make your own decisions and all members of your family/support network agree on the action to be taken, there generally are no problems. However, all it may take is one dissenting member to call decisions into question.
Even if you've already given your health care provider a copy of your advance directives, don't forget to share them with family members and review them from time to time, in case your thoughts and wishes have changed.
Families plan and prepare for major life events: attending college, getting married, having a baby, and retiring at the end of a career. However, few plan for events such as how we would want our health care delivered if we become very ill.
Or some people may be adamant about not going into a nursing home but they fail to plan for securing long-term care insurance, home modifications, or having someone to advocate for them if they cannot communicate. Rarely do we think that far head.
These are decisions that we all should be thinking about. They should be documented so that our family members, health care providers, etc. will know our wishes for our care.
In generations past, people who were terminally ill remained at home, dying quickly from infectious diseases or accidents. Today, with the deluge of new medicines and technologies, we have become a "death denying" society, in which death is an enemy that must be beaten at all costs. We focus on fighting death rather than preparing for its inevitability.
Talking with family members, physicians, or social workers about your desires for medical care at the end of your life is called advance care planning. This is an opportunity to express what kinds of life-sustaining treatment you would want—or do not want—in case you are unable to decide or speak for yourself.
If you are close to death, you may not want to have Cardio Pulmonary Resuscitation (CPR) if your heart stops, for example, or other treatments such as pain medicine and tube feedings.
Advance care planning can be difficult because it requires you to evaluate your priorities about the quality of life and understand different life-sustaining medical treatments and the implications for choosing or refusing various options.
Every adult can benefit from Advance Care Planning. Planning is particularly important for those who are terminally ill. Research shows that people suffering from chronic illness also benefit from advance care planning. Even healthy people should consider their wishes for end-of-life care and discuss their decisions with family members or professionals, before a health care crisis occurs.
Because an accident or serious illness can happen suddenly, and at any time, thinking about this topic when you are capable of making decisions is important. Sharing these decisions with your family helps to ease their burden and reduce their uncertainty if they ever have to make health care decisions on your behalf.
Studies funded by the Agency for Healthcare Research and Quality (AHRQ) have shown that people who talked with their family, physician, or others about their preferences for end-of-life care had less fear and anxiety, felt more in control of their own medical care, and believed their doctor had a better understanding of their wishes. Other potential benefits of advance care planning according to the National Institutes of Health include:
- Decreased personal worry
- Decreased feelings of helplessness and guilt for the family
- Decreased implementation of costly, specialized medical interventions
- Decreased overall health care costs
Verbally expressing your wishes for future medical care with others is helpful and legally binding, but it is more important to write your instructions on an advanced directives form that will be used in the event that others must make medical treatment decisions. The two types of advance directives are the living will and the durable power of attorney.
A living will is a written, legal document that specifies what kind of treatment you want in certain situations. This may include specific care options, such as CPR if cardiac or respiratory arrest occurs, artificial feeding options, prolonged use of a respirator, if unable to breathe adequately alone, and blood transfusions.
The durable power of attorney for health care allows you to name someone who can make medical decisions for you if you are unconscious or lose your ability to communicate. This document does not appoint anyone to make legal or financial decisions for you.
Every state has its own laws regarding advance directives, so ask social workers or health care providers about the laws in your state. The federal 1990 Patient Self-Determination Act requires hospitals, nursing homes, and other medical institutions that receive Medicare and Medicaid funding to provide written information about advance care directives to all patients at the time of admission.
Having an advance directive is the best way to make your choices known. Yet, in an AHRQ study, less than 50 percent of the severely or terminally ill patients studied had an advance directive in their medical record. An estimated 75 percent of Americans do not have written directives for their families.
- Obtain a living will form and a durable power of attorney for health care form from your health care provider. It is recommended that both forms are used.
- Complete, sign, and date the forms. The forms are legal, and it is not necessary to hire a lawyer to create them. State laws on the format of these documents vary. Some states require that forms are notarized; others specify that signed and witnessed forms are sufficient.
- Provide copies to your family members and health care providers. Bring a copy with you if you are admitted to a hospital.
Family members may have a difficult time discussing advance care planning, even when it becomes essential. When families do not know what their loved one would want in end-of-life care should a crisis arise, families must make the decisions when they are emotionally overwrought. Some people live with the lingering doubt about whether they have made the right decision or not.
An opportunity for discussing advance care plans could be during significant life events, such as the birth of a child or death of a family member. Other opportunities when this discussion would be pertinent is while drawing up a will or estate planning, or when major illness requires that a family member move into a retirement community or nursing home.
A growing trend is to seek help with planning through geriatric social workers to work through family issues. Social workers can help you explore the values that will guide your decision-making process. They will also assist with obtaining and completing forms, and ensuring that copies of your forms are available to doctors and other appropriate professionals.
Physicians, nurses, and elder law attorneys can also help with advance care planning. Planning ahead can give you peace of mind that your care decisions will be honored at the end of your life.
Important Documents To Place In An Accessible, Fire-Safe, Secure Location
Here is a list of important documents you should have on hand if you are considering making plans to take care of your parents.
- Property deeds/auto titles.
- Burial plot deeds.
- Birth certificate/adoption records
- Birth certificate of spouse.
- Marriage certificates.
- Divorce decrees.
- Death certificates, spouses.
- Military discharge.
- Immigration and Naturalization Service Card (green card).
- Estate dispersion documents (attorney should know where all copies are located).
- Advance directives (primary care physician, hospital, and individual should have copies).
- Property tax receipts.
- List of routine household bills.
- Copies of previous three years tax returns.
- Personal loan records.
- Retirement and pension policies, including the names of beneficiaries.
- Insurance policies.
- Bank accounts, pass books.
- Certificates of deposit.
- Investment certificates.
- Business venture interests.
- Account or provision for funeral and health care.
Aging With Dignity
Aging with Dignity was established to provide people with practical advice to plan for the end of life. This organization created an advance directive document, Five Wishes, which is honored in most states. The Five Wishes document is a thoughtful approach to advance care planning and addresses the following 5 issues:
- Which person you want to make health care decisions for you when you can’t make them.
- The kind of medical treatment you want or don’t want.
- How comfortable you want to be.
- How you want people to treat you.
- What you want your loved ones to know.
U.S. Living Will Registry ®
This registry was created to promote the use of advance directives and make people's health care choices available to caregivers, families and providers while maintaining confidentiality of the information and documents. There is no cost to individuals to store their documents and people are responsible for updating their documents. The electronically stored directives are accessible to providers through secure transmittals. This website is particularly helpful for people who travel frequently.
American Bar Association Consumer's Tool Kit for Health Care Advance Planning
This website is offered through the American Bar Association Commission on Legal Problems of the Elderly. The website offers links to locate elder law attorneys throughout the country. The website offers the following 10 tools to assist in health care advance planning:
- How to select your health care agent or proxy
- Are some conditions worse than death?
- How do you weigh odds of survival?
- Personal priorities and spiritual values important to your medical decisions
- After death decisions to think about now
- Conversation scripts: Getting past the resistance
- The proxy quiz for family & physician
- What to do after signing your health care advance directive
- Guide for health care proxies
- Resources: Advance planning for health care
Caring Connections , a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation. The website offers detailed information on the following topics:
National media coverage of the Terri Shiavo case earlier this year has encouraged people to take control of their future medical care, after witnessing the consequences faced when plans are not considered or known by loved ones.
One trend is for people to complete advance directives. Advance directives are documents that address medical treatment desires (living wills) and the appointment of surrogate decision makers in the case of incapacity (durable powers of attorney for health care). Living wills set forth in writing specific treatment decisions that people would either desire or would not want in the future should they become unable to express their desires. However, there are many problems with this directive. It is difficult to anticipate future medical treatment scenarios and living will statements are often vague (i.e. "no heroic efforts") and difficult to interpret. Thus, it is generally advised to have both a living will and appoint a surrogate decision maker.
Choosing a surrogate decision maker can be difficult. Research suggests that "surrogates'" decisions do not always agree with what the person would have wanted. People typically chose a close relative to serve as surrogate-although that may not be the best choice. Surrogates should be capable of emotionally dealing with decision-making needed at the time of incapacity and changing health conditions. Choosing a surrogate is particularly important for people in non-traditional relationships (such as relationships outside of a legal marriage) and those who are distant from their loved ones as well as those who know few people. In addition, good communication with your surrogate helps ensure that your desires and values are prominently considered in future decision-making.
A large trend is focused on thoughtfully expressing your future desires. Directives such as the Five Wishes and ethical wills (www.agingwithdignity.org/5wishes.html) represent an increasingly popular planning option that encourages people to reflect on what is most important to them. People should consider their goals in treatment and values in living. Quality of life is a subjectively defined experience and people value aspects of their life differently than others. For some, independence is most valued and becoming dependent on others for daily care is a fate worse than death.
Although advance directives meet the legal requirements for advance care plans, there is a growing consensus that the documents are limited. A key trend views advance care planning as a process that is best conducted between people and their relatives or loved ones. Communication between family members regarding advance care plans is fraught with difficulties. Barriers to communication lie with both adult child and parent. Family members may avoid discussing advance care plans for a variety of reasons including fears of death and abandonment, difficulty anticipating loss, and unspoken personal beliefs or expectations regarding the end of life. In addition, communication patterns are unique to each family and influenced by the roles played by members in the family as well as relationships between members, their past histories, and a host of cultural and religious factors.
Communication between individuals and their loved ones is important. In the absence of communication regarding advance care plans, families are obliged to make decisions within time frames that are likely to be constrained by health care provider practices and health care organization policies. In cases where advance care plans were not communicated, families will face life and death decision-making with the added burdens of time involvement, physical tasks, financial costs, emotional burdens, and mental health risks. It is not uncommon that during such stressful periods, family emotions, conflicts, grief, and guilt further complicate the decision-making process.
Families ought to consider discussing advance care plans with each other long before a crisis ensues. A growing trend is to seek professional planning, through geriatric case managers and others, to work through these family issues. Indeed, there is much to be gained from the communication of advance care plans. For the person who has made advance care plans, benefits include:
- Comfort in being prepared for end of life care
- Sense of independence is enhanced
- Personal wishes are more likely to be honored
- Surrogate is clearly identified
- Trust is fostered among family members, and
- Advance care plans can be enacted in a timely manner
- Clarity regarding person's wishes
- Increased comfort and decreased conflict among family members and between family, and provider upon person's incapacitation; and
- Preparation for eventual reflection that advances care plans were in agreement with person's values
The portability of care plans and advance directive documents is also a major concern. Portability refers to care plans and advanced directives being different from state to state. Another growing trend is to store the documents electronically through a variety of nationally based websites. States and localities are likely to soon offer the electronic storage and retrieval of directives. At the time of this writing, Arizona has already enacted such a public service.
As the nations' population continues to age and medical technology continues to prolong the natural life course, most families are destined to face future medical decision-making in the days ahead. Considering the benefits of advance care planning, it is surprising that so few have discussed their goals and desires with their families. So begin the discussion, look for opportunities to advance the discussion, be flexible and recognize that advance care planning is a process and not a one-time event. Use professionals such as physicians, geriatric social workers, nurses, clergy, case managers, and elder law attorneys to facilitate the dialogue. Your involvement in advance care planning enhances the likelihood that your personal health goals will be honored throughout the end of life.