What You Must Know About End-of-Life Care
If you have cancer that has spread or a chronic progressive condition, such as chronic obstructive pulmonary disease (COPD), you may want to take the time now to make some important decisions about your future.
First, you will need to determine whether you want to decide ahead of time what types of treatments you do—and don’t—want as your disease progresses. Some people feel more comfortable leaving the decision up to their doctor and family members. But if you do want to have input, it’s best to provide written instructions.
You can also designate someone who can make decisions for you if you are unable to make them and learn about the options for hospice care so you can discuss your wishes with your family. Also, if your disease is not too far along, you can take steps now to ease problems later and improve your quality of life throughout the course of your illness
Palliative care, also called supportive care, is available for people who are seriously ill. While most people associate palliative care with end-of-life hospice, it can enhance your treatment plan at any stage.
Treatment focuses on preventing and relieving suffering (but the intent of the care is not to cure the disease); achieving the best quality of life; and providing psychological, social, decision-making and, if desired, spiritual support. It’s offered as a benefit by many private insurance companies; Medicare Part B, which is optional, may offer some coverage depending on the treatment.
Palliative care providers often work as part of a multidisciplinary team, which may include doctors, nurses, registered dietitians, pharmacists, social workers, psychologists, and hospital chaplains. Studies have shown that starting palliative care before the hospice stage can boost overall physical, functional, emotional, and social well-being.
If your doctor doesn’t initiate the discussion about palliative care, ask whether there is a specialist on your hospital’s staff. Lists of providers are also available through the Center to Advance Palliative Care and the National Hospice and Palliative Care Organization.
Written instructions that you can give for your future medical care, if, at some point, you are not able to make decisions for yourself are called advance directives. There are two types: a living will and a durable power of attorney for health care. If you decide to provide advance directives, you may wish to have one or both types.
• Living will. This document explains your wishes for medical care in case you cannot communicate. A living will protects your right to accept or refuse care, and it removes the burden of life-or- death decisions from your family members or your medical team.
In your living will, you can state that you don’t want to be kept alive artificially or to receive aggressive medical treatment to save your life, but that you do not wish to refuse all medical care. For example, you may want to receive only palliative care to alleviate pain and suffering.
A living will can also include your choices regarding issues such as do-not-resuscitate (DNR) orders; use of IV-administered nutrients and hydration if you’re unable to eat or drink; and use of life-sustaining equipment, such as a ventilator or respirator, if you are unable to breathe on your own
Laws about when a living will goes into effect and which medical interventions it applies to may vary from state to state. Ask your doctor, the hospital social worker, or your family lawyer to explain the law in your state.
• Durable power of attorney for health care. Also known as a health care proxy, this document names a person (sometimes referred to as a proxy) whom you designate to make decisions regarding end-of-life care if you are unable to make them yourself.
This person can also see to it that your wishes as described in your living will are carried out. Usually this is someone you know well and trust to make decisions that will represent your wishes in case they are not laid out in your living will.
Keep in mind that it’s not always possible to foresee every decision that will need to be made. Therefore, if your substitute decision-maker is someone you trust, giving general guidance about your wishes and values may be more helpful than explicit instructions.
In some states, a health care proxy is allowed to make medical decisions for the patient only at the end of life, while in others, he or she can make decisions at any time the patient is unable to do so.
Once you have decided which advance directives you want, fill out the forms, and sign and date them in the presence of a competent adult witness (in some states two people must witness the signing) or a notary public. Once signed, these documents are legal and binding. Be sure to distribute signed copies to your family and doctors. If you change your mind about any of your wishes, update, re-sign, and redistribute the revised documents.
It’s not necessary to see an attorney to prepare these documents, but be sure that the forms you use conform to the laws in your state. Caring Connections, a program of the NHPCO, (800-658-8898), has state-by-state information on advance directives.
Hospice is appropriate when you and your doctors agree that curative treatments (if there are any) are no longer helpful, when the burdens of treatment outweigh their benefits or, generally, when you enter the last six months of life. Palliative care, including counseling for you and your family, is provided, but curative treatments are not administered.
Hospice care can be provided at inpatient centers or at your home. Many people appreciate the comfort and dignity it affords. It’s offered as a benefit by many private insurance companies and Medicare.