Legal Issues and Self-Advocacy

Many hospitals and physicians today ask upon admission if you have taken care of legal matters such as writing a will, setting up a health care power of attorney, drafting medical directives, deciding upon organ donation, and related topics. These are serious matters you should be addressing ahead of time, not just for yourself, but also for your family in the event you are unable to communicate.

In the past few years these topics have become easier to discuss with families and friends. There is a wealth of resources available to develop these legal and other documents:

• A power of attorney is a formal document that allows someone else to act as your legal representative and to make binding decisions on your behalf.
• A will is a legal document that outlines what you want done with your property after you die.
• A medical directive lets family and the medical teams know what treatments you want or don't want. It is also called an advanced medical directive. There is more on this topic below.

If you want to be an organ donor tell your family and your caregiver in addition to indicating your wish via a driver's license or other document. Click here for a web site that will help you designate your wish to be a donor. http://www.organdonor.gov/donor/index.htm. State departments of motor vehicles, division of drivers' licenses, are the locations where most potential donors register, through their driver renewals. Some states have donor registries.

There are many sources for developing these documents. A lawyer can help you put them together. Often hospitals provide medical forms to patients. The web can provide some forms, but be sure they will be legal in your state. A popular document called "Five Wishes" can help you get started thinking about the medical aspects of your preferences. It is available by clicking here.

• http://www.agingwithdignity.org/5wishes.html

Talk to your family about your wishes. If they do not know what you want, they are put in a difficult position trying to figure out the best course when you are unable to indicate your desire, and if the situation is a crisis and requires fast decisions, their job is more difficult. If they have your preferences in writing the task is easier for them.

Advance Health Care Directives

The Advance Health Care Directive (AHCD) is a way to make your healthcare wishes known if you are unable to communicate. The AHCD tells others what kind of medical treatment you would want, or would not want, if you had a serious illness or injury. The AHCD also lets you name someone you trust to speak for you if you cannot speak for yourself; this person is described as your "agent" or "surrogate decision-maker."

Everyone, age 18 and older, should complete an AHCD, as an accident as well as a chronic illness can affect any one of us. Your AHCD is only used if you are unconscious or too ill to communicate; at all other times you will express your own decisions about your medical care.

Three things help you receive the type of care you would want during critical illness or at the end of your life:

• Completing the AHCD
• Talking about your wishes with your family
• Talking about your wishes with your doctor

Many people have not had these discussions with family or their doctor, possibly because as a society we do not tend to talk about death and dying and many of us try to avoid talking about these issues, much less planning for them.

Yet research shows that people do have strong feelings about end-of-life issues. They want to participate in the decision-making for what medical treatment they will receive.

• They want physical, emotional and spiritual support and care.
• Most people want to die peacefully, without extreme pain, and without suffering and prolonged dependence.
• People care about the impact of their illness on their family, both emotionally and financially.

However, the medical system is legally obligated to provide emergency cardiac resuscitation and advanced life support unless there has been legal documentation, like an AHCD or other statement of preferences for treatment. Technology has made it possible to extend bodily functions beyond what many people would consider reasonable quality of life. Thus, it is important to plan and discuss end-of-life care issues, so that the care and treatment you want will be provided when the time comes. 

First Steps

The first steps in planning for this time of your life actually involve considering what is important to you in life and what are your values or beliefs; for example: What things give meaning to my life? Is length of life most important to me, or is quality of life? What do I mean by quality of life? What level of disability, and for how long would I be willing to accept this disability, in order to prolong my life? How would I want to spend the last month of my life? How will my decisions affect the people around me, emotionally and financially? Who should make these decisions for me if I cannot speak for myself?

If you cannot express your choices and preferences for medical care, the first question is "Has the individual written an AHCD that identifies their agent or surrogate decision-maker who can speak for them?"

• If there is no AHCD, then typically the spouse, or next, of kin, such as a son or daughter will be asked to speak for you.
• During a medical crisis, the stress of the situation often leads to family conflict.
• Identifying your agent or decision-maker in advance helps reduce family stress and disagreements.
• Knowing your wishes in advance helps every family member during critical times.

Tell your family who you choose as your decision-maker and why. Both your physician and your decision-maker are obligated to try to provide the type of treatment that they believe YOU would choose in that situation, if you were able to communicate.

Update

Check your document periodically as your circumstances, wishes, and family members change. Find out if your state requires updating the document. Older AHCDs may reflect earlier concepts for the document:

• Older forms of advance directives include Living Wills and Natural Death Acts. These forms state that you do not want life-sustaining treatment if you become permanently unconscious or suffer from a terminal disease.
• Many states no longer promote the use of these forms and encourage completion of an AHCD to both state your wishes and name your surrogate decision-maker or agent.
• For the frail elderly or seriously ill, your doctor may recommend an additional form, such as a POLST: Physician Orders for Life-Sustaining Treatment or a Preferred Intensity of Care to further clarify your specific medical wishes during the last stages of illness.

The AHCD looks long and difficult, but is actually not hard to complete. There are key items to complete:

• Who can speak for you if you cannot speak
• Specifying if you want life sustaining treatment if you are terminally ill or in a coma and not expected to recover
• Organ and tissue donation instructions
• Your signature
• Two witnesses whose signature validates that you signed the form
• You can personalize your AHCD to include preferences for quality of life considerations, physician preference, etc.

When you have completed your AHCD, give copies to:

• Your doctor to place in your medical record,
• Your agent or surrogate decision-maker,
• The hospitals where you are receiving medical care, and
• Trusted family member by placing your copy in a well-known location where he or she can locate it.

When you have completed your AHCD, be sure to talk with your family about your wishes and values.

Additional resources:

Sacramento Healthcare Decisions has a wealth of information, including the specific site for AHCD and choosing your surrogate decision-maker. Click here to read the site.

• http://www.sachealthdecisions.org/AD.html

Caring Connections has specific state AHCD forms which you can download by clicking here.

• http://www.caringinfo.org/stateaddownload

Physician Orders for Life-Sustaining Treatment (POLST) Paradigm program is designed to improve the quality of care people receive at the end of life. It is based on effective communication of patient wishes, documentation of medical orders on a brightly colored form and a promise by health care professionals to honor these wishes. You can reach the forms if you click here.

• http://www.ohsu.edu/ethics/polst/

Prepared by Joanne H.

Advocacy in Chronic Illness

With a chronic illness patients find they often have two battles. The first is navigating the medical system, which is more and more difficult each year.

Another type of advocacy involves the ability to acquire copies of one's medical records, to obtain insurance, and manage financial issues in relation to employment, disability claims, and family leave. One more topic relating to chronic illness is equity in education for children.

A nonprofit group, Advocacy for Patients with Chronic Illness, Inc., supports patient efforts in all these issues.

In 2009 Jennifer Jaff, president of that group, participated in our patient conference. Our newsletter, Summer 2009, has a summary of her presentation. Click here to go to that issue.

Click here to go to the excellent website the group has developed. http://www.advocacyforpatients.org. On that site there is information on obtaining your medical records, health insurance issues, including coverage for treatments, medication and therapy, disability insurance, Social Security Disability income, your rights under the American with Disabilities Act, the Family Medical Leave Act, and working with schools to accommodate students who have chronic illness.

Personal Story

Selecting a medical agent

When I was diagnosed with PSC, my husband Mike was in the hospital room with me post-ERCP. We both looked blankly at the doctor not even knowing what questions to ask. We heard the dire prediction that I would need a liver transplant to survive within ten to fifteen years, and we were stunned.

Since then, Mike has accompanied me to doctor's appointments; he has helped me learn what to ask, and he has asked the questions I was afraid to ask. He has been an excellent medical agent, partner, and advocate. Now that my health is deteriorating, Mike is undergoing testing for living liver donation. This adds another layer to the liver transplant process if he is approved. Not only will my husband be putting himself at risk as my donor, but also neither of us will be able to make decisions for our care during the time after surgery. We find ourselves in search of effective, understanding, and qualified medical agents.

Definition: What exactly is a medical agent? A medical agent is someone who makes medical decisions for you if you are unable to do so. Each state has its own laws concerning how someone does this, but if you do not choose an agent, then your family members make your decisions. Family members may differ in their opinions about what you want, decisions can be delayed, and feelings can get hurt. Worse than that, you may have medical care chosen for you that you did not wish to receive. Terri Schiavo's much publicized case in Florida is an extreme example of what can happen when relatives fail to agree on care. Regardless of whom you feel is correct in her case, her example shows that failing to name an agent is risky.

The Decision: Choosing a medical agent is a complex task since there are so many issues to consider. Not only does the individual need to be someone you can trust, he/she needs to be immediately available. Given the commitment required, selecting someone who is far away, who cannot take time off of work, or who has significant family/financial issues could be a mistake. Additionally, you need to consider the personality of your agent. Is this individual assertive enough to engage in thoughtful discussions with your doctors? Can this person stand up to bullying from family members or even from medical staff?

Another criterion I find important is that the agent has the intellect to grasp medical concepts. If the agent cannot comprehend medical information, then you are at risk. Once you select an agent, plan to give him/her basic information about PSC and your surgical/therapeutic options.

While the agent doesn't need to know everything, reading articles with the PSC/liver medical vocabulary is good preparation. I am suggesting that my agent join the PSC Support group to take advantage of the articles the group posts.

According to PeaceHealth, a Catholic hospital system in the Pacific Northwest that focuses on compassionate care: Not everyone will be comfortable taking on this responsibility, so talk openly with the person you choose before completing the process. Consider choosing someone who:

• Is at least 18 years old.
• Knows you well and understands what makes life meaningful for you.
• Understands your religious and moral values.
• Will honor your wishes and do what you want, not what he or she wants.
• Will be able to make difficult choices at a stressful time.
• Will be able to refuse or stop treatment, if that is what you would want, even if it may result in your death.
• Will be assertive with health professionals if needed.
• Will be able to ask questions of doctors and others to get the information needed to make decisions.
• Lives near you or is willing and able to travel if needed to make decisions for you

(Amy Fackler, MA PeaceHealth website article, "Choosing a Health Care Agent," May 14, 2004, is available when you click here.)

• http://www.peacehealth.org/kbase/topic/special/aa114352/sec1.htm

Nolo.com a web site specializing in making legal information available to the public for free, states that you should not name a medical provider as your agent: "In fact, the laws in many states prevent you from naming such a person to make decisions for you (Irving, Shae, JD, Nolo.com website article "Choosing Your Healthcare Agent 2005." However, in absence of any next of kin, medical providers do make decisions for you. The Nolo.com site can be reached by clicking here.

• http://www.nolo.com

Finally, you need to verify that the person will accept the responsibility and understands the duties of being a medical agent. A good way to do this is to present the agent with the legal documents that make the selection official. Depending on your state's laws, a medical power of attorney, a living will, or an advance directive can name your medical agent. Often medical centers have copies of the documents for your state. Have the document reviewed by an attorney and get it notarized to help ensure it will survive any legal challenges.

Also, complete your documentation prior to becoming markedly ill, because "The person creating the medical power of attorney and living will must be mentally competent when signing it and it must be witnessed. Just as healthcare providers and staff can't be appointed as agents, they also can't act as witnesses to these documents (American Heart Association website article "Insurance, Legal Issues and Advance Directives, 2005" can be found by clicking here.

• http://www.americanheart.org/presenter.jhtml?identifier=11084

Communicate: As a last step, discuss your choice with family and friends so that they are not surprised later. Explaining your selection and your faith in your agent could promote harmony if difficult and controversial decisions arise.

After much consideration, I'm choosing a long-time friend if Mike is approved as my living donor. This friend has undergone her own medical journey with a different disease. She has spent time in hospitals, she understands how the system works, and she's one of the smartest people I know. I'm using the web to educate her about liver therapies, and I am certain that she'll know enough to communicate effectively with the doctors and with my family during the transplant journey.

Just in case, I have an alternate agent selected, too. I have drafted an advance directive that is approved in my state, and I am working on making it official. We plan to hold a family meeting once the living donation process is finished to announce the outcome. Should Mike be my donor, I will announce and explain my agent's selection then. In the meantime, we're waiting, something we've gotten very good at doing since I was listed for transplant in 2001.

Denise B.