Advance Care Planning — Helping you and your family plan for your future health care needs.
Your personal health care choices
Proper planning can help bring peace of mind
Difficult medical decisions can be overwhelming. They can be even more so without proper advice and advance preparation.
Advance care planning specialists at this facility would like you to know what your options are.
This booklet is intended to help you and your family plan for your future health care needs.
Mrs. Anderson's case
An elderly widowed nursing home resident falls and breaks her hip. After surgery at the hospital, she has a heart attack, is resuscitated, and placed on a breathing machine in the intensive care unit.
After two weeks, she remains unresponsive on the machine and her condition continues to deteriorate, despite maximum medical treatment.
Her physicians feel it is time to allow a gentle and peaceful death, but her family is conflicted. They can only guess at her wishes concerning further treatment in such circumstances because she had never discussed this with them.
Indecision is making this emotionally trying time even more difficult.
Mr. Smith's case
Mr. Smith is a resident in an ICF/MR. Two years ago, he was active, and able to interact socially. But, after a series of strokes, his health has gradually declined.
He no longer recognizes his family, and is unable to speak or walk. He is incontinent, has difficulty swallowing, often refuses to eat, and has been hospitalized several times for pneumonia and dehydration.
Each time he is treated he seems to decline further. Under these circumstances, how should future problems be treated? Should a feeding tube be placed? When his heart stops, should doctors attempt to restart it and support him with machines?
Who should make decisions for residents with terminal or irreversible conditions? What decision should be made when
- residents can no longer speak for themselves or make their wishes known?
- their relatives, children, and physicians can only guess at what treatments they might want?
- there are several children, and they don't agree?
These types of circumstances can happen to any of us, creating an emotionally trying dilemma for all involved.
Asking the tough questions
As you read about the cases of Mrs. Anderson and Mr. Smith, try to imagine how you would feel and react if this happened to you or a loved one.
If you were Mrs. Anderson, would you want your family to continue all treatments? Would you want some treatments continued but not others? If you were Mr. Smith, would you want to be kept alive or would you prefer to be allowed to die peacefully? Would your family know your wishes in either of these cases?
These personal questions can be difficult to answer if you have not thought about them or if your family does not know your wishes. Human illness is tough enough without the emotional chaos that can surround unanticipated life-and-death decisions.
A better way
Advance care planning and the use of advance directives can help eliminate the confusion, indecision and anxiety associated with difficult cases like this.
What is advance care planning?
Advance care planning is:
- a process to determine how a resident wants to be treated if he or she is very ill or near death;
- a process initiated while he or she is of sound mind and not under stress;
- a conversation between resident, family, and health care providers;
- a process that may conclude with legal documentation known as advance directives.
Why should you participate in advance care planning?
Going through this process will help you to: discover your beliefs and values about life, death, and health care choices;inform others of your beliefs, values, and wishes;document your health care choices;ensure your wishes are respected.
Advance care planning — a five-step process
Step 1: Exploration of beliefs and values
Step 2: Knowledge of health care choices
Step 3: Discussion with family and physician
Step 4: Completion of advance directives
Step 5: Informing others of their choices
Step 1: Explore your own beliefs and values.
A value is an "enduring belief that a certain type of behavior or a certain condition of life is desirable." Values can help guide decisions in life.
This step should involve a dialogue among the resident, family and providers. Questions should be asked, such as:
- How much value do you place on the quality of life when making choices about how to extend life?
- What basic life qualities are important to you?
- How would you want to be treated if you could no longer walk, feed or otherwise care for yourself?
- How would you want to be treated if you could no longer recognize or respond to loved ones?
Questions such as these may be frightening to some and yet when faced, the answers can bring peace of mind. They are also best faced with careful consideration and not in a crisis.
Step 2: Know your health care choices
Health care choices involve the medical treatments available to you. Choices should be based on the relative benefits and burdens of the treatment. There are three basic choices concerning the level or intensity of treatment:
- Palliative treatment (or comfort treatment only)
- Limited life-sustaining treatment
- Intensive life-sustaining treatment
What is palliative (or comfort treatment only)?
The goal of this type of treatment is to keep the resident comfortable and to allow a peaceful death.
- The major elements of suffering (physical, mental, social, and spiritual) are addressed.
- The resident will be kept pain free and his or her dignity will be maintained at all times.
- Only medications needed to maintain comfort will be provided.
- Tests are not ordered unless needed to help manage comfort medications.
- Intravenous lines are started only if needed for comfort.
- The resident will be moved to the hospital only if he or she cannot be kept comfortable in the facility.
- Palliative treatment is often provided by a hospice organization.
What is life-sustaining treatment?
Texas law defines life- sustaining treatment as "a treatment that, based on reasonable medical judgment, sustains the life of the resident and without which the resident will die." — Texas Health and Safety Code
Life-sustaining treatments may be either limited in specific ways, based upon your medical condition and values, or may be intensive and unlimited.
Limited life-sustaining treatment
- Does not usually include artificial life support (CPR, breathing machines, blood transfusions, or feeding tubes).
- If some form of artificial life support is used, it is for a short time to determine whether it is medically effective, or effective in meeting your values.
- Appropriate life-sustaining drugs, such as antibiotics for infection, might be used.
- Residents may be transferred to the hospital or remain at the facility.
Intensive life-sustaining treatment
- Likely means a transfer to the hospital with possible admission to the ICU if medically appropriate.
- Includes intravenous therapies, mechanical breathing machines, artificial nutrition and hydration, surgery, blood transfusions, dialysis and cardiopulmonary resuscitation.
Making choices involves weighing the potential benefits and burdens of treatment
The general benefits of treatments, when they are effective, include remission or cure of the illness and, hopefully, the ability to further enjoy life.
Unfortunately, most treatments impose burdens of some sort. Burdens may include physical and psychological suffering, social concerns such as cost and family stress, or even spiritual turmoil.
Considering the relative benefits and burdens of living with illness and the treatments that illness requires if it is to be overcome should guide your personal decisions.
The resident's physician can help explain and clarify the benefits and burdens of treatments. This discussion is part of the next step in the advance care planning process.
Step 3: Discussion with family, physician and other advisors
This may be the most difficult step for some people, yet the most crucial in making decisions and letting your wishes be known.
Let's be honest — it is not easy to talk about unpleasant things such as sickness, death, and dying and yet, these are inevitable events for all of us.
Even though they may be very difficult, these discussions are essential. It is often a great relief to families once they break the ice and begin talking about life-and-death issues.
The resident (and/or family members) should:
- Talk with physicians first to be sure they understand the benefits and burdens of the different medical treatments;
- pick a specific time and place to talk;
- reassure family members that they are OK now, but want to plan for unexpected illness or injury;
- share beliefs and values with others, especially family members and physicians;
- ask family members and physician to respect their health care choices;
- also consider talking with a spiritual adviser or attorney.
Facility staff can:
- discuss the resident's health care options;
- help the resident and family make a decision regarding advance directives; and
- help the resident complete forms.
Step 4: Completion of advance directives
An advance directive is a legal document, completed by the resident when of sound mind, that allows the resident to direct future treatment at a time when the resident is otherwise unable to make his or her wishes known.
Facts about advance directives
- There are three important types of advance directives under Texas law:
- Directive to Physicians and Family or Surrogates
- Medical power of attorney
- Out-of-hospital DNR
- An advance directive should be the final step in the process of advance care planning.
- Advance directives are documents that encourage people to think and talk about the care they want at the end of life.
- They apply only to health care decisions and become effective only when the resident can not communicate or make his or her own health care decisions.
- You are not required by law to complete these documents.
- The resident does not have to see a lawyer to complete an advance directive, but if the resident has any legal questions he should ask a lawyer to explain it.
- With an advance directive you may appoint a health care agent or spokesperson to direct specific treatment decisions.
Health care agents
A health care agent or spokesperson
- must be an adult;
- can make decisions for you if you can't make them for yourself;
- may not be a health care provider or residential care provider;
- are legally designated on a Directive to Physicians and Family or Surrogates (commonly called a living will), or on a medical power of attorney;
- are instructed by law to make decisions based on their knowledge of your wishes.
- are prohibited from making some treatment decisions such as
- - convulsive treatment
- - psycho surgery
- - abortion
- - omission of care primarily intended to provide comfort
A health care agent's authority is effective only after a physician has certified in writing that the resident is incompetent. If you fail to choose an agent, state law provides a list of people who may make decisions for you.
Types of advance directives
A. Directive to Physicians and Family or Surrogates
- Commonly called a "living will"
- Records the resident's choices in writing
- Directs the medical care the resident wants to receive, or not receive, in the event of either a terminal or irreversible condition
- Becomes effective only when a doctor certifies that the resident has a terminal or irreversible condition and is not able to communicate his or her wishes
- Is not a substitute for a physician's order
- Gives direction to physicians, who then can write orders in accordance with resident's wishes
- Form requires two qualified witnesses
- Remains in effect until revoked
B. Medical power of attorney
- Allows the resident to appoint a person to speak for him or her
- Becomes effective when a physician has certified in writing the resident is incompetent
- The resident's spokesperson is required by law to make decisions based on his or her knowledge of the resident's values and preferences; thus the spokesperson should be included in discussions related to the creation of this type of document.
- Unlike the living will, the resident's agent may make all health care decisions for the resident once he or she is incompetent, whether or not the resident is terminally or irreversibly ill.
- Must be signed in the presence of two qualified witnesses
- Is in effect indefinitely, unless it includes an expiration date, or until the resident becomes competent or the document is revoked.
C. Out-of-hospital DNR order
- DNR means do not resuscitate
- No attempt will be made to restart the heart or breathing when the heart stops outside of the hospital setting.
- It does NOT mean do not treat for other problems.
- Resident's physician signs it.
- Effective regardless of whether a resident has a terminal or irreversible condition
- Signed in the presence of two qualified witnesses.
- In effect until revoked
- Resident may communicate his or her intent to revoke
- Destroying the form, removing the DNR identification device (if any) or directing a person acting on the resident's behalf to revoke will cancel the order.
Step 5: Informing others of my choices
Signed copies of the advance directives should be provided to people who need to know about your decisions.
- The resident must keep the original copy of the advance directives.
- Signed copies should be provided to the resident;
- official spokesperson
- family members
- health care providers (physicians, clinics, hospitals, nursing homes, ICF/MR, dialysis centers, etc.)
- A copy will be kept in the medical chart, will travel with the resident to the hospital if that is required and will be sent to the physician's office as well.
Key points to take home
- As long as you are able, you and your physician will make decisions together.
- Advance care planning relieves you and your family of additional emotional distress.
- Advance directives are the legal documentation of your beliefs and values.
- You always have the right to cancel or change your advance directives. Facility staff are available to meet with you individually to answer your questions and assist you in completing advance directive forms.
Where can I get help?
Legal Hotline for Older Texans:
Free legal assistance for low-income Texans:
For more information concerning advance care planning and to download advance directive forms:
DADS Media Services 9P219 • December 2008 • Publication 278
Updated: March 26, 2013