FREQUENTLY ASKED QUESTIONS ABOUT ADVANCE DIRECTIVES, LIVING WILLS, MEDICAL POWER OF ATTORNEY, AND LIFE SUPPORT CONSIDERATIONS
PART I: The Documents
1. What is an advance directive?
An advance directive is an order to your health care provider (usually a doctor) made in advance of a loss of competency, which directs the health care provider, your family, or a surrogate decision maker how to manage your health care in the event you are unable to communicate your wishes yourself.
2. Isn't that a living will?
A living will is only one kind of advance directive. Texas law calls a living will a "Directive to Physicians and Family or Surrogates."
3. What are the types of directives?
Texas law provides four directive forms:
- The Directive to Physicians and Family or Surrogates;
- Directiva a Las Medicos y Familiares o Substitutos;
- A Medical Power of Attorney;
- Poder Legal ParaAsuntos Medicos
- An Out-of-Hospital Do-Not-Resuscitate (DNR) Order,
- Spanish instructions for An Out-of-Hospital (DNR) Order and
- A Mental Health Treatment Declaration.
Copies of the first five documents can be downloaded by clicking on the title above.
4. When does a Directive to Physicians and Family or Surrogate Take Effect?
Only when the following three conditions have been met:
- When you are unable to speak for yourself
- When you are suffering from a terminal or irreversible condition
- When the doctor has verified that you are suffering from a terminal or irreversible condition
5. How do I fill out a Directive to Physicians?
- Read the form carefully and add into the space provided any specific directions which you have such as: “I do not want tube feeding unless it is temporary” Or “I don’t want to be on dialysis permanently.”
- Name someone you trust to be your medical power of attorney to make decisions on your behalf when you are not able to speak up for yourself.
- Have your signature witnessed by two people. One of these adults cannot be a family member or a person in direct patient care.
6. When does a Medical Power of Attorney take effect?
Only when the following two conditions have been met:
- When you are unable to speak for yourself
- When the doctor has verified that you are not able to make decisions for yourself.
Follow the directions in filling out the form. Have your signature witnessed by two adults. One of these adults cannot be a family member or a person in direct patient care.
7. Can I name my doctor as the person to be my Medical Power of Attorney?
By state law, physicians may not serve as Medical Power of Attorney for their patients.
8. Who can fill out and sign Advance Directive forms?
Only an adult, 18 years of age or over, who still has decision-making capacity, can fill out and sign a Directive to Physicians or a Medical Power of Attorney. The Out of Hospital DNR order is signed by the patient, if competent, or by the family, if the patient no longer has decision-making capacity, or by two doctors if the patient has no available family.
9. Does a directive have to be notarized?
The law specifically states that none of the Advance Directive documents must be notarized.
10. What should I Do With my Advance Directive document?
- Give copies to your immediate family. This is particularly important if your immediate family lives out of town so that those family members also have an opportunity to discuss these issues with you and assure themselves that they understand your wishes.
- Give a copy to your primary care physician and discuss it with him or her - do not expect the physician to remember that you have an advance directive or to bring this document to the hospital. (It may be many years before the document actually takes effect.)
- Keep copies in an envelope with the copies of other documents needed for the hospital such as the Medicare or insurance card.
- Give a copy to someone who will bring it to the hospital for you if you are brought to the hospital in an emergency.
But most important of all:
Discuss your wishes with your family and close friends.
11. Can my family revoke my Advance Directive?
No, the Advance Directive is a legal document, and like a property will, can only be revoked by the person who signed the document.
PART II: The Rationale for these Documents
12. Why are people being urged to discuss life support issues with their families and to do Advances Directives? This was never an issue in the past.
Modern medicine has allowed many people to survive for many years with chronic or degenerative diseases who, in the past, died much more rapidly. Today, only about 10% of people in the USAdie suddenly. Only about 20% of people die at home. The second highest cause of death for people with end stage renal disease is a deliberate decision to stop dialysis. About 50% of all patients die in the hospital. For many of these patients, decisions had to be made about life support or life sustaining procedures. Much of the time, the family is making these decisions for a person who no longer has decision-making capacity.
Throughout most of life, medical treatment decisions are simple. When we get sick, we go to a doctor who prescribes a treatment. We follow the treatment plan and recover. Yet as health declines, medical decisions become more complex. Patients may have multiple medical problems. For patients with a life-threatening illness or even a long term chronic illness, some medical treatments offer little benefit. At the same time these treatments may be painful or burdensome. Sometimes, people conclude that the burdens outweigh the benefits and thus refusal of or withdrawal of medical treatments is the best choice.
If the patient and family have discussed these issues in advance, the burden on the family to make these decisions is much less. And, finally, when doctors and medical treatments can no longer cure, comfort care and pain control can always be a part of the treatment plan.
The four main decisions to made are 1) Is it time to shift the goals of treatment from cure to comfort care only? 2) Should resuscitation (CPR) be attempted? 3) Should someone in a nursing home or ill at home be hospitalized? and 4) Should artificial nutrition and hydration be used?
These decisions are not just intellectual decisions but deeply emotional and spiritual decisions.
13. Why Have an Advance Directive?
- As a gift to your family and loved ones so that they will be able to make these decisions with more comfort and less guilt, pain, and anxiety.
- So that your wishes for treatment will be respected.
- So that you can chose among your relatives or friends someone to name as your surrogate or health care power of attorney who can advocate on your behalf and would be willing to act on your wishes even in an emotional setting. This should be someone with good communication skills if possible.
- Assist you in clarifying what your values and decisions would be as you discuss these issues with your family and friends.
- May save your family both financially and emotionally. Sometimes families continue medical treatments long past the point where they are helpful, simply because they are unsure what their loved one would have wanted. This is emotionally and financially costly… and unnecessary. This also leads to unnecessary and futile suffering.
- May bring your family closer together as you discuss these deeply spiritual and emotional issues.
14. Why is this so important? If I get sick, I'll have plenty of time to discuss treatments with my doctor. I don't want to be bothered with this.
If you have some sort of unpredictable illness or accident and you are unconscious there is no way to communicate your health care wishes to your doctor. If you have not discussed possible medical treatments with your doctor, loved ones, trusted friends, or a clergy person, who would know what you would wish to have done for you, or not done for you? It may be important that someone knows your wishes concerning medical care if you are unable to communicate those wishes. And, it is important that someone has the legal right to make those decisions for you if that person knows of your wishes. Additionally, it is not a wise decision to make choices concerning health care treatment when you are under stress.
15. What is the purpose of the TexasOut of Hospital DNR order?
This document is actually a Do Not Resuscitate Order signed by the patient or family and the physician. This allow the patient to be treated by the paramedics and transported in an ambulance or receive treatment in an outpatient or emergency setting without having CPR used in the event that the person’s heart stops or the person stops breathing. This document is valid everywhere except when the person is admitted as an inpatient in the hospital. At that time the admitting physician would need to rewrite the DNR order if the desire of the patient or family is to continue DNR status.
The Texas Out of Hospital DNR order form should be placed where it is easily accessible to the paramedics such as the wall over the patient’s bed, the back of the front door, on the head board of the patient’s bed. Sitters with the patient should be made aware of the document.
The document can only be revoked by the person who signed this document.
This document takes effect as soon as the document is completed with the physician’s signature.
PART III: Special Problems
16. If I try to talk about this to my loved ones they will be very upset and I do not want to upset the people I love.
If you do not talk about your wishes BEFORE something happens how will anyone know what you would have chosen? It is uncomfortable to talk of these things, but the advances in medical treatment today make it very necessary that someone knows what your wishes are. If you take the time to decide what treatments you may or may not want at some time you will be giving your loved ones a great deal of peace of mind if those decisions ever have to be made.
17. What happens if I don’t sign a Directive to Physicians or name someone as my Medical Power of Attorney?
Texas Law provides that the following people would make these decisions in this order of precedence.
- Your spouse. If you have no spouse or your spouse is unable to make these decisions, then
- Your adult children. The decision would be made by the majority of the adult children participating in the decision, even if by phone. The oldest child or the oldest son does not have priority. If you have no spouse and no adult children, then
- Your parents. If you have no parents or your parents are not able to make these decisions, then
- Other relatives with priority given to those closest by blood. For example, your siblings would have priority over your nieces and nephews.
- Two physicians, if the patient has no family available or the family is not willing to make these decisions.
18. I have been taking care of my mother. Shouldn’t I be the one to make the decisions instead of my brothers and sisters?
No, unless your mother, while she was mentally able to make decisions, signed a Directive to Physicians or Medical Power of Attorney giving you the right to make these decisions, then the caregiver does not have any more right to make decisions than the rest of his/her brothers and sisters. The Directive to Physicians or Medical Power of Attorney must be signed while the person is still able to make decisions for himself/herself.
19. What about making decisions for children?
Decisions about life support or life sustaining treatment can be made by the parents or guardian although the law does make a provision for children to supercede their parents’ decisions about life support. However, this provision is vague, without any guidance as to determining decision-making capacity. Therefore if an older child and his/her parents disagree about life support or life sustaining treatment, then a family conference including the child and the health care professionals would be very appropriate.
While the Directive to Physicians document and the Medical Power of Attorney document can only be signed by adult competent patients, parents could put in writing their decisions for a child who is terminally or irreversible ill. In the hospital, parents will be asked to sign a form in regard to their decisions for the child.
Also parents may sign a TexasOut of Hospital DNR Order Form on behalf of their child.
20. What if my doctor doesn’t want to follow my advance directive or the decisions of my family if I don’t have an advance directive?
TexasStateLaw requires that the physician follow the decisions of the patient or family or surrogate when the patient is either terminally or irreversibly ill. If the physician does not wish to follow these decisions, he must inform the family and transfer the care of the patient to another physician.
Should you believe that there is a problem, then please ask to consult Sister Rose, the nursing supervisor, or the ethics committee of the hospital.
21. Will I get aggressive treatment in the Emergency Room if I have an Directive to Physicians and Family or Surrogates (living will)?
Yes. The physicians in the Emergency Room usually cannot decide whether a person is terminally or irreversibly ill without sufficient time to assess the patient, run tests, etc. This is why some people have a Texas Out of Hospital DNR which is signed by their physicians, can be honored in the Emergency Room and shows that this assessment has already been done.
PART IV: Treatment Decisions
22. What is meant by life-support or life sustaining treatments? Is this only breathing machines?
No, life support or life sustaining treatments means those treatments which, based on reasonable medical judgment, sustains the life of the patient and without which the patient will die. This term includes both life-sustaining medications and life support such as resuscitation, mechanical breathing machines, kidney dialysis treatment, blood transfusions, antibiotics, and artificial hydration and nutrition. Pain management medication and other comfort care measures are always provided.
23. What do you mean by terminally or irreversibly ill?
Terminally ill means a terminal condition caused by injury, disease, or illness that according to reasonable medical judgment will produce death within six months, even with available life-sustaining treatment provided in accordance with the prevailing standard of medical care.
An irreversible condition means a condition, injury, or illness 1) that may be treated, but is never cured or eliminated, 2) that leaves a person unable to care for or make decisions for himself/herself, and 3) that, without life-sustaining treatment provided in accordance with the prevailing standards of medical care is fatal.
One example to explain these terms is the Alzheimer’s patient. In the beginning stages of Alzheimer’s the patient is irreversibly ill but the Directive does not take effect by the definition in the law because the patient can still take care of himself or herself, and in the early stages, make some decisions. As the disease progresses, the patient can no longer make decisions or take care of the activities of daily living. In the final stages of the disease, the patient may be considered terminally ill.
24. What about CPR? Why not give the patient a chance?
CPR, cardio-pulmonary resuscitation, was originally intended for use in situations in which death was accidental or in which an otherwise health person experienced a heart attack or stopped breathing. Today, however, CPR is the norm for all patients in nursing homes and hospitals.
But CPR, or a Full Code as it is sometimes called, does have its burdens. The ribs of a frail patient can be broken and the lung punctured. Moreover, the success rate for CPR is very low in a hospital or nursing home setting – less than 15% in the hospital and less than 2% in the nursing home. Patients with a low chance of survival are those with more than one or two medical problems, those with a terminal disease, and those who do not live independently. Sometimes a successful resuscitation attempt ends with the patient brain damaged and on a breathing machine. Then further decisions may need to be made about the breathing machine if the patient cannot be successfully removed.
CPR severely reduces the possibility of a peaceful death. When a person is suffering from a terminal disease, some people even view death caused by a heart attack as a more peaceful way to die.
Should a decision be made not to perform CPR, then the doctor must write an order for a DNR, Do Not Resuscitate, or a No Code order. This order will not be written without the permission of the family or patient.
When a DNR order or No Code order has been written, all other treatments and medications are continued. The medical treatment of the patient remains the same with the exception that resuscitation will not be attempted.
25. Isn’t tube feeding (nutrition and hydration by medical means) always required?
- No, none of the types of artificial nutrition and hydration are required by law in the terminally or irreversibly ill patient. Artificial nutrition and hydration means the provision of nutrients or fluids by a tube inserted in a vein, or under the skin in the subcutaneous tissues, or in an opening into the stomach.
- Of all the life support decisions, this is the most difficult to make because of the tremendous symbolic meaning of food and water. For many people, the decision to forgo artificial nutrition and hydration seems to them to be the cause of death, while others see the decision to forgo as allowing the disease process to take its natural course and as not prolonging the dying process.
- Some people mistakenly believe that the patient will get better with tube feeding. Unless the patient was malnourished, the underlying disease process, whatever that may be, will not improve with artificial nutrition and hydration.
- Those physicians who have studied the dying process tell us that, in the dying patient, the body begins to shut down thus it is very natural for the patient to feel less hungry and thirsty. In fact, these physicians tell us that to give artificial food and nutrition may cause more discomfort.
- Then there are the patients who live with a feeding tube and carry on with the activities of living, such as watching TV and chatting with their family.
- There are also patients for whom the tube feeding is a temporary measure.
- The situations which we hear about in the news are those of people with brain damage and without a purposeful response to their environment. These are the patients who may live for months or years with a tube feeding but without improvement in their medical condition.
- Artificial nutrition and hydration, once started, can be discontinued at a later date if the patient’s condition does not improve or continues to deteriorate. However, from a psychological standpoint, it is often more difficult to discontinue than never to have started.
- The decision to withhold or withdraw artificial nutrition and hydration is a decision which can only be made by the patient or the family if the patient is not able to make these decisions and has not made a decision in advance.
- Talking over these issues in advance with family helps to make this decision less stressful when and if the time comes.
26. Doesn’t a person have to be brain dead to remove life support?
There are two definitions of death, cardiac death or brain death. Brain death is defined as the irreversible loss of all functions of the brain, including blood flow and electrical activity. Special tests are done by the physician to determine if brain death has occurred instead of a coma or a severely unresponsive state. If the physician determines that brain death has occurred, then the time of the physician’s determination of brain death is listed as the time of the patient’s death. After the determination of brain death, if the patient is a candidate for organ donation, the family will be requested to make a decision in regard to the donation of solid organs such as the liver, heart, lungs, kidney, etc. Life support will be removed after the family decides not to donate or after the donation if the family decides to donate.
If the patient is not a candidate for organ donation, the family will be notified of the patient’s death and life support will be removed. Permission of the family is not required.
In most situations where life support is withheld or withdrawn, the patient is not brain dead. The principle most often used to make these decisions is the burden/benefit calculus. That is, a person (or surrogate decision maker for the patient) may forgo extraordinary or disproportionate means of preserving life. Disproportionate means are those means that in the patient’s judgment do not offer a reasonable hope of benefit or entail an excessive burden, or impose excessive expense on the family or community.
An example might be the bedridden sick person who finds that the three trips a week to the dialysis center entails an excessive burden and so decides to forgo dialysis even though the person will die sooner. Many other examples could be given.
PART V. Other Considerations
27. How can we decide what decisions to make? Is it possible to let go?
Here are questions to ask youself to assist in making these decisions for another person:
- What are the medical facts? What is the overall prognosis for the patient? Ask the physician to be candid with you. Some physicians wait for the family to indicate their willingness to discuss these issues.
- How much recovery will the patient have after this hospitalization? What care will the patient need?
- What are the options and consequences of each option, both long and short term? What are the benefits and burdens of each option? For example, if the tube feeding is continued, what are the consequences, benefits and burdens both now and after the patient leaves the hospital. If the tube feeding is discontinued, what are the consequences, benefits, and burdens?
- What is the goal of medical care at this time? The possible goals of medical care are cure, stabilization of functioning, or preparing for a comfortable and dignified death.
- What would the patient want if he/she cannot get better in regard to life support or life sustaining treatments?
- If the patient cannot recover, why am I reluctant to let go?
28. What do the various religions believe about withdrawing or withholding life support measures? Is withdrawing life support euthanasia?
There are so many religions that it is impossible to make one statement about these issues that includes every religion. However, in general, the major Christian religions believe that withholding or withdrawing life support in the case of a terminally ill or irreversibly ill patient, when done with respect and the proper motivation, is not morally wrong or sinful. The task of medicine is to care even when it cannot cure. Faith allows us to face the reality of death with the knowledge that each person is created for eternal life. The use of life-sustaining technology is judged in the light of the Christian meaning of life, suffering, and death. Only in this way are two extremes avoided: on the one hand, the insistence on useless or burdensome technology even when a person may legitimately wish to forgo it and, on the other hand, the withdrawal of technology with the intention of causing death.
Often, people may say, “When it is time, God will call the patient to himself.” But, perhaps, God is calling the patient to himself, but we are standing in the way by insisting on continuing life support and life sustaining therapy.
Withdrawing or withholding life support for the terminally or irreversibly ill patient is not usually considered euthanasia.
For more information on these topics, you may contact Sr. Rose Tresp at firstname.lastname@example.org or talk to your minister.
29. What is Hospice?
Hospice is an organization that assists patients and families when the decision has been made to seek comfort care or palliative care rather than curative care. Hospice offers a team approach of care that is focused on the alleviation of physical symptoms and the provision of emotional, psychosocial, and spiritual support to patients and their families or significant others. Hospice affirms life and neither hastens nor postpones death. Hospice exists in the hope and belief that through appropriate care, and the promotion of a caring community, sensitive to their needs, patients and families may be free to attain a degree of mental and spiritual preparation for death that is satisfactory to them.
30. I/we would like more help with this issue. Who can we call? Can my church or club get a speaker on these issues?
Please call Sister Rose Tresp at 956-796-3841 if you want further information, consultation, or a speaker. Talks and consultations can also be arranged in Spanish.
31. Other Considerations in End-Of-Life issues
Consider your relationships with family and friends. Are there people you are estranged from? Are there unresolved hurts and unforgiven injuries in your family? Are there close family members at a distance who have less family contacts?
Often, these are the family members who will have the most difficulty when decisions have to be made about life support. These are the ones who will say, “do everything” even when physicians and other health personnel are saying these treatments are futile. A well-known phenomenon at hospitals is the relative from out-of-town who appears and demands aggressive treatment based less on the patient’s medical condition and more on the degree of guilt felt by the relative.
Sometimes the primary caretaker and those close to the patient will be able to face the reality of the illness with more objectivity, although the pain of the loss of the loved one is still there. The decisions are not easier but may be more realistic.
Sometimes a caretaker may have given up a job and devoted him or herself to the care of a parent. While the primary caretaker is usually more realistic, sometimes this person is fearful for his or her own future when the position of caretaker is no longer needed. Financial insecurity, housing insecurity, may also be an issue. The rest of the family needs to be aware of underlying issues not directly related to the illness of the patient
32.The doctor told us that my mother has a terminally ill disease; we don’t want her to know because she may lose hope. Is this the right decision?
We know that sometimes families do not wish their terminally ill family member to be told the truth for fear that the patient will give up or lose hope or become depressed. Certainly, it is natural for anyone receiving bad news to be depressed. The role of family and friends is encouragement and support during this time.
Should patients be told the truth? The religious beliefs of most denominations are that persons in danger of death should be provided with whatever information is necessary to help them understand their condition and have the opportunity to discuss their condition with their family members and care providers in order to prepare well for death both for spiritual and practical reasons.
What happens when a patient is not told the truth? Studies tell us that most patients do know that they are dying; patients have even told nurses that their family doesn’t want them to know. Studies also tell us that the knowledge of a terminal illness does not cause the patient to die sooner. When the family keeps this information from the patient, a conspiracy of silence occurs in which patient and family are denied the opportunity for real sharing and communication.
When the patient is not told the truth, a relationship of dishonesty is set up between family and patient. Do we really want the last months and weeks of our relationship with a loved one to be one of dishonesty? We deprive the patient of the opportunity to deal with unfinished business that may be spiritual, psychological, emotional, or practical.