The Basics of End-of-Life Care

More than ever before, people with cancer and their families are being asked to take part in decisions about end-of-life care. Yet, sadly, most people do not discuss end-of-life care at all, even if they are seriously ill. This brief will provide you with an outline for thinking about these issues and some guidelines for discussion with your doctor, your family and loved ones. We hope that this brief will also help you understand the medical, legal and personal choices you may face in the future.

What is End-of-Life Care? What are Advance Directives?

End-of-Life Care is a general term that refers to the medical and psychosocial care given in the advanced or terminal stages of illness. The legal documents, such as the living will, durable power of attorney and health care proxy, which allow people to convey their decisions about end-of-life care ahead of time, are called Advance Directives. Advance Directives provide a way to communicate your wishes to your family, friends and health care professionals and to avoid confusion later on, should your become disabled and unable to speak.

Ideally, the process of verbalizing and writing Advance Directives should be ongoing, rather than a single event. Your Advance Directives can be modified as your situation changes. Once Advance Directives have been given, you may change your mind at any time.

Why is it important to write a will?

A will is important so that you can give instructions about distribution of your property when you die. You can name a trusted family member, friend or professional to handle your personal affairs (also known as an Executor). It is advisable to seek the expert advice of a lawyer in drawing up a will, so that your decisions about taxes, beneficiaries and asset distribution will be legally binding. This process can relieve your family and friends of an enormous burden in case of disputes or questions about allocation of your assets.

What is a Living Will?

A Living Will is a set of instructions documenting a person's wishes about life-sustaining medical care. It is used if you become terminally ill, incapacitated or otherwise unable to communicate. Everyone has the right to accept or refuse medical care. A Living Will protects your rights and removes the burden for decision-making from family, friends and physicians.

There are many forms of life-sustaining care that should be taken into consideration when drafting a Living Will. These include:

* Buy a wig before all of your hair falls out so that you can get a good color match.

* Keep in mind that there are full-service wig salons where they fit and style wigs.

* the use of life-sustaining equipment (dialysis machines; ventilators; respirators)

* "do not resuscitate" orders, that is, instructions not to use CPR if breathing or heartbeat stops

* artificial hydration and nutrition (tube feeding)

* withholding of food and fluids

* organ and tissue donation

* palliative/comfort care

It is also important to understand that your decision not to receive "aggressive medical treatment" is not the same as withholding all medical care. You can still request antibiotics, nutrition, pain medication, radiation therapy and other interventions when the goal of treatment becomes comfort rather than cure.

Once you have drawn up a Living Will, talk your feelings over with the people who matter most, explaining the values underlying your decisions. Most states require that you have the document witnessed. Then it's advisable to make copies of the document, place the original in a safe, accessible place and give copies to your doctor, hospital and next of kin. You may also consider keeping a card in your wallet declaring that you have a Living Will and where it can be found.

Each state has guidelines for creating a Living Will. You do not need a lawyer to complete a Living Will. Appropriate forms can be obtained from health care providers, legal offices, Offices on Aging and organizations such as Choice in Dying (1-800-989-9455).

What is a Health Care Proxy and Durable Power of Attorney?

A health care proxy is an agent (a person) you appoint to make your medical decisions if you are unable to do so. Generally, people assign someone they know well and trust to represent their preferences when they can no longer do so. An agent can also manage your financial and personal affairs if you cannot. Be sure to ask this person if he or she agrees to act as your agent. An agent may have to use his or her best judgment in the event of a medical decision for which your wishes are not known.

The durable power of attorney for health care is the legal document that names your health care proxy. Once written, it should be witnessed, notarized, signed, dated, copied, handed out and incorporated into your medical record.

Conclusion

Complex choices about end-of-life care are difficult even when we are well. If you are seriously ill, they can seem overwhelming. But you should keep in mind that avoiding these decisions now will only place a heavier burden on your loved ones later on. Avoidance now may also create friction between your caregivers and the medical staff if you are unable to talk, and can result in unwanted treatment being imposed upon you. Communicating your wishes about end-of-life care will ensure that you face the end of your life with dignity and with the same values by which you have lived. If you need help in making the decisions discussed in this Brief, you should not hesitate to call upon your family, friends and other loved ones, or call an organization like Cancer Care that can assist you in this process.