Living a Healthy Life with Chronic Pain (50 page)

In everyone’s life there comes a point when regular medical care is no longer helpful and it is time to prepare for death. At this stage of life, medical and other care is aimed at making the person as comfortable as possible and providing a good quality of life. In most parts of the United States and Canada, as well as in many other parts of the world, both palliative care and hospice care are available to serve this function. Palliative care is available for those expected to live more than six months. Most hospices accept people who are expected to die within six months, although this does not mean you will not receive care if you live longer than six months.

Thanks to modern medicine, we often have several weeks or months, and sometimes years, to make final preparations. This is when hospice care is so useful. It provides the terminally ill person with the highest quality of life possible. At the same time, hospice professionals help both the person and the family prepare for death with dignity. Today most hospice care programs are in-home—the person stays in his or her own home and the services come to them. There are also residential hospices where people can go for their last days.

Often people wait until the last few days before death to ask for hospice care. They somehow see asking for it as “giving up.” By delaying hospice care, they often put an unnecessary burden on themselves, as well as family and friends. Consider as well that, at least for some diseases, studies show that people who receive hospice care actually live longer than those who receive more aggressive treatment.

The same is true of families that say they can cope without help. This may be true, but the
person’s final days may be much better if hos-If you, a family member, or a friend is in the end pice tends to all the medical issues so that fam-stage of illness, you should find and make use ily and friends are free to give love and support. of your local hospice. It is a wonderful final gift.

Although none of us have absolute control over our own deaths, our deaths are, like the rest of our lives, something we can help manage. You can have input, make decisions, and probably add a great deal to the quality of your death. Proper management can lessen the negative impact of your death on your family and friends. That is the role of an advance directive—to help you manage medical and legal issues as well as help you plan for both expected and unexpected end-of-life situations.

Advance directives are written instructions about what kind of care you would like to receive if and when you are not able to make medical decisions for yourself—for example, if you are unconscious, in a coma, or mentally incompetent. Usually an advance directive describes both the types of treatments you want and those you do not want. There are different types of advance directives.

A living will is a document that states the kind of medical or life-sustaining treatments you want if you become seriously or terminally ill. A living will, however, does not let you appoint someone to make those decisions for you. (Note that in Canada, living wills have limited legal force, as the term does not appear in Canadian legislation.)

A durable power of attorney (DPA) for health care does two things: it allows you to name someone to serve as your agent or substitute decision maker, and it gives guidelines to your agent about your health care wishes. (In Canada, the equivalent term to DPA is powers of attorney for person, representation agreements, or medical proxies, depending on the jurisdiction. We will refer to DPA for the rest of this section, but the discussion applies equally to Canada.) You can let your agent make the decisions, but many people prefer to give instructions according to their own wishes. This guidance can cover a broad range of care, from aggressive life-sustaining measures to the withholding of these measures.

A DPA for health care allows you to appoint someone else to act as your agent only in matters relating to health care. It does not give this person the right to act on your behalf in other ways, such as handling your financial matters. In general, a DPA is more useful than a living will because it allows you to appoint someone to make decisions for you, and it can be activated at any time when you are unable to make
decisions due to any illness, accident, or injury. A living will is valid only in the case of a terminal illness. The only time a DPA may not be the best choice is if there is no one you trust to act on your behalf. We include detailed information on preparing a durable power of attorney for health care in the pages that follow.

A do not resuscitate (DNR) order is a request not to be given cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. A DNR can be included as part of a living will or durable power of attorney for health care; however, you do not need to have either of those in order to have a DNR order. Your doctor can put a DNR in your medical chart so it can guide the actions of the hospital and any health care provider. You can also post a DNR on your refrigerator so that emergency personnel will know your wishes. Without a DNR order, hospital or emergency personnel will make every effort to resuscitate you. DNR orders are accepted in all states and throughout Canada.

Although advance directives for health care are generally used for end-of-life situations, they may also be prepared to direct the type of mental health treatment you wish to receive in the event you become incapacitated due to mental illness. Under U.S. federal law, in most states you may combine advance directives for health care and mental health care in one document and appoint an agent to act on your behalf for both issues. Some states, however, require separate documents. This allows you to choose different agents for health care and mental health care. For more information on mental health advance directives and the specific practices in your state, check the website of the National Resource Center on Psychiatric Advance Directives (
www.nrc-pad.org
). In Canada, practices on mental health care directives differ by province. For more information, check with your local health care authority or hospital, or contact your local branch of the Canadian Mental Health Association (
www.cmha.ca
).

In both the United States and Canada, a power of attorney (POA) is a document that gives someone you appoint the power to make your financial or business decisions. If you are no longer able to make these decisions and you need to pay for care but you have not granted POA to someone, your family or friends (or even sometimes the state) will have to go to court to address your financial obligations. This can be very expensive. You may want to talk to your lawyer about the advantages and disadvantages of a POA.

Adults should prepare a durable power of attorney for health care. Unexpected events can happen to anyone at any age. This is a different document from a regular power of attorney. The DPA for health care applies only to health care decisions. You do not need to see a lawyer to draw up a durable power of attorney. You can do this by yourself with no legal assistance.

To prepare a durable power of attorney for health care first choose your agent or substitute decision maker. It can be a friend or family member. It cannot be the physician who is
providing your care. Your agent should probably live in your area. If the agent is not available on short notice to make decisions for you, he or she is not much help. You can also name a backup or secondary agent who can act for you if your primary agent is not available.

Be sure that your agent thinks like you or at least would be willing to carry out your wishes. You must be able to trust that this person has your interests at heart and truly understands and will respect your wishes. He or she should be mature, composed, and comfortable with your wishes. Sometimes a spouse or child is not the best agent because they are too close to you emotionally. For example, if you do not want to be resuscitated in the case of a severe heart attack, your agent has to be able to tell the doctor not to resuscitate. This could be very difficult or impossible for a family member. Be sure your agent is up to this task. You may want your agent to be someone who will find this job less of an emotional burden than a partner or child would.

In summary, look for the following characteristics in an agent:

• Someone who will be available should they need to act for you
  

• Someone who understands your wishes and is willing to carry them out
  

• Someone who is emotionally prepared and able to carry out your wishes, and will not feel burdened by doing so
  

Finding the right agent is a very important task. It may mean talking to several people. These may be the most important interviews you will ever conduct. We talk more about discussing your wishes with family, friends, and your doctor later in this chapter.

After you have identified an agent, determine what you want. This process will be guided by your beliefs and values. Some DPA forms provide several general statements concerning medical treatment. These can help convey your directions to your agent. Here are some examples:

• I do not want my life to be prolonged and I do not want life-sustaining treatment to be provided or continued (1) if I am in an irreversible coma or persistent vegetative state or (2) if I am terminally ill and the application of life-sustaining procedures would serve only to artificially delay the moment of my death or (3) under any other circumstances where the burdens of the treatment outweigh the expected benefits. I want my agent to consider the relief of suffering and the quality as well as the extent of the possible extension of my life in making decisions concerning life-sustaining treatment
  .
  

• I want my life to be prolonged, and I want life-sustaining treatment to be provided unless I am in a coma or vegetative state that my doctor reasonably believes to be irreversible. Once my doctor has reasonably concluded that I will remain unconscious for the rest of my life, I do not want life-sustaining treatment to be provided or continued
  .
  

• I want my life to be prolonged to the greatest extent possible without regard to my condition, the chances I have for recovery, or the cost of the procedures
  .
  

If you use a form containing such suggested general statements, all you need to do is initial the statement that applies to you.

Other forms allow you to make a “general statement of granted authority,” in which you give your agent the power to make decisions. In this case, you do not write out the details of what these decisions should be. Instead you are trusting that your agent will follow your wishes. Since these wishes are not explicitly written, it is very important to discuss them in detail with your agent.

All forms also have a space in which you can write out any specific wishes. You are not required to give specific details, but you may want to do so.

Knowing what specifics to address is a little complicated. None of us can predict the future or know the exact circumstances in which the agent will have to act. You can get some idea by asking your doctor what he or she thinks are the most likely developments for someone with your condition. You can then use this information to direct your agent on how to act. Your directions can discuss outcomes, specific circumstances, or both. If you discuss outcomes, the statement should focus on which outcomes would be acceptable and which would not (for example, “resuscitate if I can continue to fully function mentally”).

There are several decisions you need to make when directing your agent or substitute decision maker on how to act in your behalf:

• Generally, how much treatment do you want? This can range from the very aggressive to the very conservative—that is, either doing many things to sustain life or doing almost nothing to sustain life, except to keep you clean and comfortable.
  

• Given the types of life-threatening events that are likely to happen to people with your condition, what sorts of treatment do you want and under what conditions?
  

• If you become mentally incapacitated, what sorts of treatment do you want for other illnesses, such as pneumonia?
  

Although each state and Canadian province has different regulations and forms for advance directives, the information presented here should be useful wherever you live. Check out some of the websites at the end of this chapter for forms you can download. You can also find them at your local health department, Area Agency on Aging, hospitals, or even the offices of your health care providers. For information about advance directives in other countries, visit the Growth House website (
www.growthhouse.org
). If you move to another state or province or if you travel a lot, it is best to check with a lawyer in your destination jurisdiction to see if your document is legally binding there.

One final very important note: Do not put your durable power of attorney in your safe deposit box. No one will be able to get it when it is needed.

Writing down your wishes and having a durable power of attorney is not the end of the job. If you really want your wishes carried out, it is important that you share them fully with your agent, your family, and your doctor. This is often not an easy task.

Before you can have this conversation though, everyone involved needs to have copies of your DPA for health care. Once you have completed the documents, have them witnessed and signed. In some places you can have your
DPA notarized instead of having it witnessed. Make several copies; your agents, family members, and doctors will all need to have one. It is also a good idea to give one to your lawyer.

When you are ready to talk about your wishes, remember that people don’t like to discuss the death of a loved one. Don’t be surprised that when you bring up this subject, if the response is, “Oh, don’t think about that,” “That’s a long time off,” or “Don’t be so morbid; you’re not that sick.” Unfortunately, this is usually enough to end the conversation. Your job as a good self-manager is to keep the conversation progressing. There are several ways to do this.

After you have given copies of your DPA to the appropriate family members or friends, ask them to read it. Then set a specific time to discuss it. If they give you one of the avoidance responses, explain that you understand this is a difficult topic, but it is important. This is a good time to practice the “I” messages discussed in
Chapters 10
—for example, “I understand that death is a difficult thing to talk about. However, it is very important to me that we have this discussion.”

Another strategy is to get blank copies of the DPA form for all your family members and suggest that you fill them out together. This could even be part of a family get-together. Present this as an important aspect of being a mature adult and responsible family member. Making this a family project involving everyone may make it easier to discuss. Besides, it will help clarify everyone’s values about death and dying.

If these two suggestions seem too difficult or impossible to carry out, consider writing a letter or e-mail or preparing a video or CD that can then be sent to family members. Talk about why you feel your death is an important topic to discuss and that you want them to know your wishes. Then state your wishes, providing reasons for your choices. At the same time, send them a copy of your DPA for health care. Ask that they respond in some way, or set aside some time to talk in person or on the phone.

As mentioned, when deciding on your agent, it is important to choose someone with whom you can talk freely and exchange ideas. If your agent is not willing or unable to talk to you about your wishes, you have probably chosen the wrong person. Remember, just because someone is very close to you does not mean that he or she really understands your wishes or is able to carry them out. This topic should not be left to an unspoken understanding unless you don’t mind if your agent decides differently from what you wish. For this reason, it is essential to choose someone who is not as close to you emotionally and then talk things out with that person. This is especially true if you have not written out the details of your wishes.