Jeanne M. Hannah, Esq.
Postal address:5922 Deer Trail Drive, Traverse City, Michigan 49684
Tel. 231.223.7864 Fax. 231.223.7868 Cell. 231.369.2140
E-mail: jeannemhannah@pentel.net

 

Facing End-of-Life Decisions and Making Choices: A Guide for Caregivers

By: Jeanne M. Hannah, Family Lawyer, Traverse City, Michigan

Advance Medical Directives

Some decisions are best not left until the end of life. One such decision is the ability to decide what kind of treatment a person wants as she nears the end of life. [1]  If your loved one executes a legal document that names you as her patient advocate, you will have the authority to direct and empower a doctor, nursing home, or hospital to rely upon your treatment decisions if she is unable to participate in those decisions.

In Michigan, state law permits residents to make their wishes for end-of-life care legally binding. Those wishes must be in writing. Some people call such a document a “Living Will,” although the document is not actually a will. Other names used are “Durable Power of Attorney for Health Care” and “Advance Directive.”  In such a document, your loved one will be able to specify what kind of care and treatment she does or doesn’t want if her doctors say that she’s too ill to survive. She will also be able to tell her doctors how comfortable she wants to be. In other words, she’ll be able to say that she wants enough pain medication to keep her comfortable even if the drugs would hasten her death.

Your loved one can also say that she doesn’t want cardio-pulmonary resuscitation (CPR) if it will only prolong her suffering. She can decline extraordinary treatment such as mechanical breathing and artificial nutrition at the end of life. She can direct that if such a treatment has already been started, it should be stopped.  If she chooses to have no CPR because her condition is terminal, she might also choose to wear a “DNR” (Do not resuscitate) bracelet. If she is later hospitalized, her chart will then be marked “DNR.”

Doctors, nurses, hospitals, and home health care employees will honor your terminally ill loved one’s written directive. It’s important, though, that the directive be done while your loved one remains competent.

Family caregivers are sometimes permitted to make treatment decisions even if the patient has not appointed a patient advocate or health care agent. Unfortunately, this cannot be guaranteed. That’s why it is best if your loved one completes a written document stating exactly she wants for end-of-life treatment and care, so that her last wishes may be taken into consideration. She can avoid the problems that could be encountered if, for example, a stroke or other medical condition prevents her from speaking out about what kind of treatment she wants or doesn’t want. She can also avoid the problems that sometimes occur when family members, siblings, for example, disagree about what kind of end-of-life care should be given.

In Michigan, advance directives must be witnessed and the designated agents or advocates must sign a statement accepting the designation and its limits. Advance directives may be revoked or changed at any time. It is important that you recognize this fact and that you and your loved one insist upon it. The best way to revoke a designation is to tear it up or destroy it.

Objectives

Advantages of advance directives are many. An advanced directive allows your loved one to name a health care agent and an alternate and to authorize her to make medical decisions. Your loved one may write specific instructions that she wants her doctors and caregivers to follow regarding the type of medical treatment and care she wants.

A properly drawn advance directive allows your loved one to tell you and her loved ones just what “life-support treatment” means to her and to choose different levels of life support depending on specific situations. She may want certain life support treatment such as tube feeding if she has suffered a stroke and is not presently able to eat but is expected to recover with a reasonable quality of life. On the other hand, she may choose not to have such treatment where she is close to death, where she is in a coma and not expected to wake up or recover, or where she is suffering permanent and severe brain damage and is not expected to recover. A proper advance directive allows her to choose strict limitations on what kind of life-support can be used, even if she will die if she does not have the treatment or if it is withdrawn after having already been started.

An advance directive allows your loved one to tell you and your family how comfortable she wants to be. She will be allowed to choose to have pain medications even if the use of such medications may hasten her death.

Your loved one may, if she chooses, personalize her advance directive in order to tell you and her family how she wants to be treated as she is dying – whether she wants someone at her bedside, whom she wants there, whether she wants pictures of her family nearby, and so on.

Your loved one may also choose to specify whether she wants to be buried or cremated, to give end-of-life messages to you and your family, and to address issues related to grieving and funerals or memorial services.

Having an advance directive and designating a patient advocate or health care agent provides your loved one with assurance that her wishes regarding her last days or hours will be honored. It also helps families make difficult end-of-life decisions about issues that can be distressing to families, particularly during the final days of a loved one that may be stressful. Family caregivers may need reassurance that carrying out their loved one’s last wishes will not cause her pain and discomfort. This is particularly true if she has expressed a wish that nutrition and/or hydration be withheld or withdrawn. An additional advantage is that the process of making an advance directive allows patients and their families to begin the process of accepting that dying is a natural part of the life process and to begin grieving.

There are other good reasons why a written designation should be made. Written designations eliminate the difficulty of end-of-life decision-making and provide your loved one with peace and dignity at the end of her life. If your loved one is unable to communicate her wishes, serious conflicts may arise when family members are called upon to decide whether tube feeding, cardio-pulmonary support, antibiotics, or advanced and invasive diagnostics such as a brain biopsy or a spinal tap, should be provided. Sometimes family members have serious disagreements about how much life support should be used. Sometimes a family member’s ideas are inconsistent with the wishes of your loved one. Guilt, grief, or potential conflicts of interest may cloud the issues. Sometimes a loved one’s condition makes death an inevitable outcome and, if the family doesn’t truly understand the issues, their decisions may be inconsistent with the patient’s condition and probable outcome and also contrary to her wishes. This is why it is so important that she make her preferences for care and/or withdrawal of treatment clear. In addition, having an advance directive may permit your loved one to die with dignity by eliminating any guesswork about what her wishes might have been.

How to Talk about End-of-Life Care

The dying process is not easy to cope with. But, your loved one’s final days may be made less traumatic and less stressful for her and for you if you talk with her about her wishes for end-of-life care, and if she puts her wishes in writing. Unfortunately, not many caregivers have the option to talk about end-of-life care with their loved ones while they are healthy.

What is the best way to start talking about end-of-life care? Jim Towey, founder of Aging with Dignity, suggests that you might start by talking about someone else's end-of-life care. Be sure to give your loved one time to begin grieving the loss of a friend or family member, though. Try to find a day when your loved one is feeling well. A day when she’s feeling ill or depressed is not the best time to talk about her end-of-life wishes.

Plan to have at least 30 to 60 minutes (or more) available for this discussion so that it is meaningful and doesn’t seem rushed. Many doctors are now trained in talking about end-of-life care with patients and their families. If your loved one’s doctor has the time, he or she might be a good facilitator. Clergy, mental health professionals and hospice nurses and social workers are other good choices for people to help you and your loved one through this conversation.

It’s usually best to have a private, one-on-one talk. Be sure to find a quiet, private place to have this discussion. It’s not helpful if phone calls or visitors interrupt this type of difficult conversation.

If your loved one has recently been told by her doctor that she as a serious illness, she might be ready to talk about end-of-life care. Although her doctor may not have told her that her illness is terminal, you might encourage her to talk about what kind of care she would want if her disease or conditions worsens.

Before you begin to talk about end-of-life choices, be sure you have learned what her options are for a living will, an advance directive, and hospice care. But don’t just drop in carrying such a document. First talk with her about her wishes. Then wait until your loved one has had time to think about your discussion, and until she brings up the topic again. If a week or so goes by and she doesn’t talk about end-of-life decisions, you might bring it up again. But wait for her to feel comfortable with the idea before you give her an advance directive and talk about the choices with her.

Some ways you might start talking with her about end-of-life care are:

 

Don’t limit your talk with your loved on to medical issues such as use of oxygen, pain medications, antibiotics, mechanical life support, and artificial nutrition. It’s very important that you talk with her about the kind of care that allows her to have dignity and comfort in her last days. Memories and forgiveness are also important things to talk about. Talking to her about how she wants to be remembered is not only important, it gives you something to share with other family members and friends during the grieving process. Find out who your loved one wants to have at her bedside in her final hours, and whether she wants to hear any special music or poems or prayers.

Be sure to be a good listener during this conversation. Don’t interrupt her, and be alert and sensitive to her mood. It’s important that you let her set the pace and that you support her by letting her know that you understand and honor her thoughts. You can show her your agreement by nodding or giving her a comforting touch or hug. You might have to extend your talks with her over a period of several days. Remember that if she is having trouble dealing with the idea of impending death, she needn’t make all of her decisions on the same day. If she becomes uncomfortable, you may decide to postpone the discussion until another day.

 

Common Questions Regarding Advance Directives

 

Common fears individuals express regarding advance directives include the following:

1.  What if I change my mind about the whole thing? Suppose I decide I want to take my chances and do want a respirator after all?

All advance directives can be revoked. There are several ways to revoke one. Revocation can be done by tearing it up, or by telling your doctor, your nurse, your designated advocate, or your family that you have changed your mind. All are legally bound to honor your revocation.

 

  1. What if I change my mind about whom I want designated as my advocate?

It is easy to change your designated advocate. Just cross out the individual’s name and sign and date the page. If you wish, you can write in the name of an alternate.

 

3.  What if I change my mind about the kind of treatment I do or do not want?

You can change the kind of treatment you want to have in the same way as you might change the advocate.

 

4.      Whom should I designate as my patient advocate?

You are the person who will know better than anyone whom you should choose to be your patient advocate and to enforce your preferences for end-of-life care. It will be a person or persons whom you trust to honor your wishes. People usually designate their children or their spouse, but you could also choose a trusted friend.  People who cannot lawfully be designated to make end-of-life choices are your doctor, your nurse, or any health care provider.  They are not allowed to witness the execution of one, either. You will probably want to designate persons who live close enough to you to actively participate. But, you can specify that your advocate can make decisions during telephone consultations. An advocate must be 18 or older.

5.  Will my children be angry if my directive tells them to make a decision to withhold treatment?

In the author’s experience, most children are relieved that such decisions are taken out of their hands. A good directive is very clear about the treatment and diagnostics you do and do not want. Because of that, children generally don’t feel guilty. In fact, they may feel relieved that they are carrying out your wishes, not making decisions on their own. It is important that you provide your child or children with a copy of your directive and talk with them about your wishes.

 

6.  What other kinds of powers can I give my advocate?

There are many things that you can empower your advocate to do or specify that they may not do. Some examples of things you might want your advocate to do (or choose that they may not do) include: choosing doctors or specialists for you, moving you to another state if that is necessary for treatment; choosing a hospital or nursing home for you and placing you there,  authorizing or refusing medications, including pain medications, deciding whether medical treatment, including life-sustaining measures and artificial nourishment, should be started, stopped, or not given at all, deciding whether you will be given artificially provided water, food, or medications; applying for Medicare or Medicaid benefits for you; and having access to your medical records and the authority to release them as need be.

 

7.  Will I still need a “Do Not Resuscitate” order if I have a written medical directive?

It may be easier if you have a separate DNR form. Typically these are available from your local office on aging, from your doctor’s office, and from hospitals.

 

8.  Are there any special forms I need to complete to authorize a patient advocate to act on my behalf at any time I am not able to participate in my treatment decisions?

Michigan has its own particular laws regarding medical directives. You should consult with a lawyer to make sure you have a form drafted according to state law.

 

9.      What if my family or my doctors refuse to honor my wishes?

There isn’t an easy answer to this question. That’s why it’s important for you to talk about your wishes with your doctor and your family before you need the benefits of a medical directive. If you feel strongly about limiting life support treatment at the end of your life, and if your family doesn’t agree with your position and makes it clear that they will not honor your last wishes, you may need to ask a family friend to be your patient advocate. It’s a good idea to find out how your doctor feels, as well, because if he or she doesn’t agree with your wishes, you might decide to change your doctor before a conflict arises.

 

10.   Who should have copies of an advance directive?

Copies of your advance directive should be given to the person or persons your loved one designates as her patient advocate. She should also give one to her doctor and to a care facility where she may live. Some hospitals will keep a medical directive on file. It is best to see if the hospital your loved one would ordinarily use will do so.     

     By facing end-of-life issues before the end of life comes, you will help your loved one and yourself, as well as other family members, approach impending death with grace, courage, and in peace.



[1]   Instead of using “he or she” in discussing your loved one, the author will avoid this linguistic entanglement by using the female gender, recognizing that your loved one may be either male or female.