Advance Directives: Why You Should Put Your Wishes in Writing

Advance Directives: Why You Should Put Your Wishes in Writing

WebMD Live Events Transcript

The Terri Schiavo case in Florida has brought national attention to the importance of clearly documenting and communicating your wishes for medical care if you become unable to make these decisions for yourself. Everyone - regardless of age or health status - should take the time to make their wishes known. Tom Swanson, PhD, from VistaCare hospice, joined us on March 30, 2005 to answer your questions about advance care planning.

The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.

MODERATOR:
Welcome to WebMD Live, Dr. Swanson. Why is it not enough to just tell your family how you want to be treated or not treated at the end of your days?

SWANSON:
First, I would say, it is important that you communicate your wishes to your family and loved ones, but it is not enough when it comes to situations where legal determinations need to be made.

That's where documents related to advanced directives become so important. Because the documents really allows you to make a legal statement about your wishes regarding medical care if you should become unable to make these decisions for yourself. It's also extremely important that, regardless of age or health status currently, you make these written documentations now rather than wait until perhaps it's too late.

MODERATOR:
There are several different documents that we've heard about in reference to end-of-life decisions. Can you please explain the various documents and their purpose?

SWANSON:
When speaking of advanced directives, there are three types of legal documents that generally apply:

  • A living will
  • A health care power of attorney or medical power of attorney
  • A do not resuscitate order or DNR

All three documents let you give very clear instructions about the medical care you want to receive in the event that you become unable to speak for yourself because of a serious illness or being incapacitated.

These are important because they're not only a legal document for the courts and the state you live in, but they also communicate clearly your wishes to your family, physician and other medical personnel that you may encounter during health care crisis.

Advanced directives are important because they help insure that the patient's wishes are honored, they prevent or minimize conflict between family members during a difficult and emotional time, and they can ease the burden for family members who have to make decisions on behalf of the patient. When making those decisions, they will know rather than having to guess or end up feeling guilty, because they know that this is what the patient and their loved one really wanted.

MODERATOR:
What does a living will entail?

SWANSON:
A living will is a document that states the patient's wishes about withdrawing or withholding life sustaining procedures. A living will usually documents the patient's wishes in regards to several medical treatments:

  • Cardiopulmonary resuscitation or CPR
  • Artificial hydration and nutrition
  • Mechanical ventilation
  • Blood dialysis and transfusions
  • Surgeries
  • Medications

A living will asks an individual what their preferences would be should they find themselves in a life-limiting illness or perhaps find themselves in a persistent vegetative state.

It's important that a living will be completed by a patient while they have the capacity to do so, which is another reason why it's important to complete a living will before a crisis occurs. Capacity can be defined by the ability to comprehend information, contemplate options, evaluate risks and consequences, and communicate decisions.

MEMBER QUESTION:
I'm worried because I've heard that even if you have a living will, the doctors can still insert a feeding tube and then refuse to unhook it.

SWANSON:
It's important with a living will that you not only complete it, but that you communicate clearly your wishes that are on the living will with your family members, physician, and in choosing a medical power of attorney, to make sure they have a copy also.

Sometimes a doctor may not have the actual living will in the medical chart, so in the absence of a hard copy, they won't necessarily accept somebody's verbal acknowledgement of that. If you have a hard copy, it's unlikely a physician would override that, but certainly that can happen.

"Advanced directives are important because they help insure that the patient's wishes are honored, they prevent or minimize conflict between family members during a difficult and emotional time, and they can ease the burden for family members who have to make decisions on behalf of the patient."

MODERATOR:
And if that would happen and the family then presents the hard copy, would a physician then be required to remove the feeding tube?

SWANSON:
I'm not sure if a physician would feel required to do so, but if the family produced the document and the family members and medical power of attorney were all in agreement, I think the physician would honor those wishes. If for some reason he felt an ethical conflict, the physician might bring this case to the hospital ethics committee. But most often, in my experience, physicians will honor a living will document, particularly after they've consulted with the medical power of attorney.

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MODERATOR:
So it is very important to discuss your wishes with your doctor before there is a need to insure that your wishes and your doctor's personal code of ethics are not in conflict.

SWANSON:
This brings us to the importance of identifying and completing a health care power of attorney form which allows you to designate someone to speak on your behalf.

MODERATOR:
Please explain "medical power of attorney."

SWANSON:
An MPA [Medical Power of Attorney], sometimes called a durable health care power of attorney, is a document that allows any individual to appoint another person to be their agent and make decisions for them should they become unable to make decisions for themselves. The health care power of attorney can make health care decisions only according to the patient's directions that are either stated in the living will or that they believe to be in the best interest of the patient and the patient's wishes. A health care power of attorney is oftentimes a family member, such as a spouse or adult child, but could be anyone the patient chooses. It could be a friend.

It's important to know that the durable health care power of attorney is limited to end-of-life situations. An example might be that if you have a stroke or heart attack, but you get proper medical treatment, and during that time you may be unable to communicate your wishes, the doctor and hospital would then want the power of attorney to give them direction for care. Once you've recovered and are able to speak for yourself, then the power of attorney isn't in force. A power of attorney can only speak for the patient when the patient is incapacitated. An example is an acute medical crisis; it may be short term, only a few days or a week. But in the event of a chronic debilitating illness like dementia, it may be from the time they start to the end of the patient's life.

It's also important to note for both the medical power of attorney and for a living will, that they can be changed at any time. Also with a living will, just because you've written something down stating your wishes, if you are conscious and alert, the physician and medical personnel will always directly ask you what you want and consult with you on treatment options.

MODERATOR:
The third document you mentioned is the DNR -- Do Not Resuscitate Order.

SWANSON:
A DNR order is an order by a physician that generally occurs while a patient is in a short stay in a hospital. It's a request to not have cardiopulmonary resuscitation if the patient's heart stops or they stop breathing.

Some states also have what they call a pre-hospital or out of hospital DNR form, and that's a form that's used for a patient who is living in their home, and if somebody panics or calls 911 in an emergency, this pre-hospital or out of hospital DNR communicates to the emergency medical personnel the patient's wishes regarding CPR. But again, the form has to be displayed in the patient's home. It usually only applies to patients with chronic life-limiting illnesses, or patients in nursing homes.

MEMBER QUESTION:
How do a DNR and a living will differ?

SWANSON:
As I said, a living will is a document that generally applies when a person has a life limiting illness or when they are in a permanent vegetative state. It describes the wishes for a variety of treatments that could be offered to the patient, including CPR, nutrition and hydration, mechanical ventilation, and so on. The DNR applies only to CPR.

MEMBER QUESTION:
Who or what determines when someone is incapacitated?

SWANSON:
That's a good question. Generally, a physician or a social worker in a hospital or in a medical setting, agency or facility can do a brief assessment to help determine the patient's capacity. As I said earlier, capacity refers to the patient's ability to comprehend information, to contemplate options, to evaluate the risks and consequences, and communicate decisions. So it's generally an informal conversation in evaluating the patient's ability to respond effectively in that conversation.

Sometimes the word capacity is interchanged with the word competent. It's important to know that the word competency is a legal term and can only be defined by the courts. So capacity is somewhat subjective, and would involve several individuals providing evidence or opinion.

MEMBER QUESTION:
Does the DNR order affect the pay-out of life insurance?

SWANSON:
No. Not that I'm aware of.

"It's not unusual for family members to disagree about what is best for their loved one and coming to terms with being able to let go."

MEMBER QUESTION:
What do you do at your hospice if a family disagrees over whether a person should be let go or not?

SWANSON:
In a hospice setting, or with VistaCare, it's not unusual for family members to disagree about what is best for their loved one and coming to terms with being able to let go. So the best ways to address those issues are to continue an open dialogue with the family to educate them fully on the patient's condition, and the prognosis; to identify the benefits and perhaps burdens of any treatment options that might be available. And also really begin to identify what the patient's wishes would be in the situation. From my standpoint, it always comes back to that. What would the patient want?

Now if it's stated in a living will, then we know it's more a matter of the difficulty of the family members having to let go, and we can reinforce in their mind that this was truly the wishes of the patient and that it's OK and important to honor those wishes. If it's not written down, then it's more a matter of having several discussions and asking the question, based on how the patient lived their life, and based on the things they've communicated to you, what do you think they'd want done now? In most cases the communication will bring about an agreement.

MEMBER QUESTION:
Why do we have the advanced directives and then a family member or the durable power of attorney changes their mind? Even after the patient's requests have been documented and when the patient is not able to make their own decisions?

SWANSON:
If you have a living will and a medical power of attorney, can the medical power of attorney overrule the living will when you are incapacitated? There are situations where a medical power of attorney could and might overrule a patient's wishes stated in a living will. Because that's possible, it makes it extremely important that the patient, when assigning a medical power of attorney, that they clearly communicate their wishes and make sure the power of attorney is willing and able to carry out those wishes because they will be depending on them to do that.

Even though it may happen -- that a power of attorney might overrule -- when it comes right down to having to make a decision, in most cases it would not happen. Before any decision was made, the hospital or hospice personnel would discuss with the power of attorney the difference between their opinion and the patient's stated wishes, and would always advocate with the patient's stated wishes.

MEMBER QUESTION:
Can you make exceptions in this document, i.e. "if there is doubt of severity of illness, the named decision maker must get other opinions before carrying out termination of treatment"?

SWANSON:
Most living will documents will give you the opportunity to make exceptions regarding certain treatments or certain situations. If you feel strongly about those, it would be important for you to communicate that in your living will. Also, I'd add that sometimes people misinterpret the living will saying it's a document that tells medical personnel all the things they do not wish to happen in a medical crisis. But, in fact, a living will also gives an individual an opportunity to communicate what they do want. So it actually serves both purposes.

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MEMBER QUESTION:
What happens when you have an advanced directive and you are visiting in another state?

SWANSON:
All states will honor living wills and medical power of attorneys. Each state sometimes has variations in regards to terms used or what exceptions can be made for residents of their state, but each state will honor a living will from a person in another state who is there temporarily. I also might add that if you move to another state as a permanent residence, it would be a good time to evaluate your current desires and wishes, and complete a new living will and medical power of attorney. You can always update either one of those documents and make changes.

MEMBER QUESTION:
Is a DNR legally binding while awaiting physician's signature?

SWANSON:
A verbal DNR will often be accepted in a health care facility, but may not be legally binding without a physician's order.

MEMBER QUESTION:
So in the absence of a hard copy, who does the medical team listen to concerning wishes?

SWANSON:
In the absence of a living will or a medical power of attorney, most states will have a list of or an order of individuals who they will turn to for determination of decision-making capability. Generally speaking, the first person on the list is a spouse, second might be either the oldest adult child or it might be a unanimous decision among the adult children. The next person, if neither of those is available or willing to serve in that capacity might be a parent, if still living, then it might go to siblings. So each state may have a different order of who they may turn to.

MEMBER QUESTION:
What if your MPA is a friend and your spouse or child challenges the legality?

SWANSON:
If you have completed a medical power of attorney form, and had it appropriately witnessed or notarized, according to the requirements of your state, then the medical personnel will always defer to the designated power of attorney. Other family members or loved ones may express their opinion, but the decision of the power of attorney will be final.

"Unfortunately, in our country, only 20% of Americans currently have advanced directives, which leaves many of us extremely vulnerable should we encounter a life-threatening illness. Don't wait. "

MEMBER QUESTION:
I wish there were a way for a doctor to help make this decision. My siblings and I have been talking about end-of-life directives but we're finding that none of us want to be the MPA for our parents. In other words, we don't want to be the one who decides to stop the support. How do you handle this?

SWANSON:
I would think that the most important thing to realize is that in a medical crisis, the health care personnel or physician will always go to the patient first to get their opinion or wishes for what they want done. If the patient is unable to communicate those wishes, then the physician can rely on the living will. They will probably discuss the options with all the family members and will seek agreement among the family members before a decision is made. So it wouldn't necessarily be one person designated as power of attorney.

My suggestion would be that you go ahead and have the patient select one of the children -- or one of the children and an alternate -- with the idea that the pressure to make the decision wouldn't be solely on them, but the children could make those decisions together amongst themselves. Only if there were disagreement would the assigned power of attorney have to make the decision. It's always better to have someone assigned as a power of attorney. The other option might be if the children are unwilling to accept that role, then the patient may choose somebody outside the family or somebody distant in the family, like a brother or cousin, or somebody else.

MEMBER QUESTION:
How do I get my elderly parents to start filling out forms and deciding what they want?

SWANSON:
The first thing would begin to establish a dialogue with your parents, discussing and asking what their wishes would be in certain situations. One might be if they had an acute medical crisis like a heart attack or stroke, or if they were diagnosed with a life-limiting illness. What would they like to be done? And then through the course of that dialogue, and you start to get their opinions and wishes, then you can obtain a copy of a living will and medical power of attorney forms that are valid in your state, and begin to discuss with them and have them complete those. It's always good to begin the dialogue and talk about it first before you actually sit down with forms to sign.

MEMBER QUESTION:
Is there somewhere you can file a hard copy so no matter what state you are in, the copy is readily available?

SWANSON:
I am aware that some states are beginning to put together a state registry of living wills. I know Arizona started it effective December of 2004, but I'm not aware of other states that have begun to do that. I think in the next several years that will be a common occurrence. So you might check with your state. I know through Arizona it is handled through the secretary of state's office, but you can check with your health care office to see if your state has started a registry. What happens there is your living will document is recorded, and any hospital personnel can check that first to see if you've completed a living will or medical power of attorney.

MEMBER QUESTION:
Do these documents have to be drawn up by an attorney or are there "do-it-yourself" kits?

SWANSON:
Advanced directive forms do not need to be completed by an attorney. They do require signatures of witnesses that are non-family or notarized, and there are many do-it-yourself advanced directive forms available. One place you can get those that are listed for individual states is VistaCare.com. They have a link to advanced directive forms or living will forms that are available free. You have to download the forms, print them, and complete them. There is other access to forms: you can go on Google and do a search for living will forms. Some are available free, others might cost $10-$15, but on www.vistacare.com, they are available free to download.

MODERATOR:
We are almost out of time. Dr. Swanson, before we wrap up for today, do you have any final comments for us?

SWANSON:
Thank you for the opportunity to discuss this very timely and important topic. I would encourage everyone to begin to have discussions with your family members regarding advanced directives, and to obtain the forms, and complete them.

Unfortunately, in our country, only 20% of Americans currently have advanced directives, which leaves many of us extremely vulnerable should we encounter a life-threatening illness. Don't wait.

If you ask people why they don't do it, one of the main responses is, "I'm not old enough." The reality is that an accident may happen this afternoon and you will not have the opportunity to do it. The second response is often we just don't want to think about or talk about death or dying. But I think it's important for all of us to challenge that fear and begin to discuss that with our spouses, parents, and our children, so it can be a topic that we can freely discuss and communicate our wishes openly.

Thank you and I encourage all of you to act on this immediately and soon, for your own benefit and for your loved ones.

MODERATOR:
Thank you for joining us today, Dr. Swanson, and thank you members. For more information, please visit www.vistacare.com.



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Reviewed on 4/12/2005 8:33:17 PM

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