Making Medical Decisions for a Loved One: A Caregiver's Guide
Today’s advances in medical technology can sustain the lives of patients in otherwise dire circumstances. Some people want every possible treatment medical science can offer in every situation; others do not. Competent adults have a legal right to refuse or have withdrawn any medical treatment. However, what do you do if a loved one cannot make his or her own medical decisions due to an injury or terminal illness? How can you make the right choices for them? The following may be helpful in making medical decisions for a family member or loved one.
Questions to Consider
* Did your loved one sign an Advance Medical Directive (a “Living Will” Declaration and/or a Durable Power of Attorney for Health Care) in which the patient indicates treatment preferences and/or names a health-care agent to make decisions on their behalf? (For more information, see “What Are Advance Medical Directives?”)
* What is the patient’s prognosis? What is the likelihood of recovery or improvement? Is the condition irreversible? Can the patient be stabilized and regain lost capacity? What is the likelihood of death within six months, even if the intervention is continued?
* What is the likely effect of the intervention? Will the intervention be a benefit to the patient, even in an irreversible condition? Or will it be burdensome, causing distress?
* Based on what you know of the patient’s preferences, would he or she want this intervention utilized? If the likely effect of the intervention will be burdensome to the patient and/or the patient would not want the intervention, have you considered alternatives, such as palliative comfort care rather than more aggressive treatment?
* Is the decision to withhold or withdraw the intervention intended to cause the patient’s death or to allow a natural death when the dying process cannot be reversed? Will the intervention increase patient suffering while only providing a minimal improvement in an irreversible condition?
* Is the decision to withhold or withdraw treatment from the patient influenced by someone’s view that the patient’s life is burdensome and not worth living?
* What is the faith/religious tradition of the patient, and what would he or she want in light of these beliefs?
* What are the attending physicians’ ethical views regarding these types of medical decisions? What are the policies and procedures of the health-care facility regarding the intervention that is being considered?
* What are the financial constraints that may have an impact on medical decisions (e.g., limited private insurance or Medicare/Medicaid coverage)? Is the decision based upon or influenced by someone who does not want to spend money on the patient’s treatment and care?
In any discussions with family members or medical professionals, it is important to define the terms used to insure that all parties interpret the words in the same way.
* Acute Care: Short-term medical care for reversible disease or trauma with the expectation of cure and patient recovery.
* Benefit: When an intervention has (or is expected to have) a positive effect to sustain or improve the patient’s health or life.
* Burden: When an intervention has (or is expected to have) a negative effect on the patient’s health or life.
* Cardiopulmonary Resuscitation (CPR): An emergency procedure to restore normal breathing and circulation after cardiac or respiratory arrest using mouth-to-mouth or mechanical assistance for breathing and external heart massage. Other medical interventions may be utilized with CPR, such as administering IV fluids and oxygen, infusions of antiarrhythmic or other cardiac drugs, electric shock delivered through a defibrillator (paddles placed on the chest), and intubation (placing tubes down the throat into the patient’s airway).
* Do Not Resuscitate (DNR) Order: A patient or a health-care agent may request a DNR order. It prevents cardiopulmonary resuscitation (CPR) should the patient stop breathing or suffer a cardiac arrest. Patients who are in compromised conditions may be less likely to recover after CPR. The intense physical nature of CPR can cause broken bones or collapsed lungs, especially among frail or elderly patients. DNR orders can vary in interpretation, so you should define the term with the health-care facility before considering one for your loved one.
* Euthanasia: The intentional killing of a patient (usually by lethal injection) by the direct intervention of a physician or another party, ostensibly for the “good” of the patient or others.
* Health-Care Agent (also referred to as Surrogate Decision-Maker): An individual designated by a patient to make medical decisions on the patient’s behalf, if he or she is unable to do so. Ideally, the health-care agent named by the patient should discuss general medical decision-making philosophy with the patient, well in advance of any medical situation resulting in the patient’s incapacitation.
* Intensive Care: The care and treatment of critically ill patients, often in an intensive Care Unit (ICU). This involves the use of life-sustaining interventions to stabilize the patient, hopefully leading to recovery.
* Life-Sustaining Intervention: A medical treatment or procedure intended to stabilize the patient and prolong life. This term primarily refers to mechanical devices, such as ventilators and dialysis (kidney) machines; but it may also include chemotherapy, antibiotics and medically assisted nutrition and hydration.
* Medically Assisted Nutrition and Hydration: The provision of nutrition (food) and hydration (water) to patients who are unable to swallow or digest normally. This can be provided by a flexible rubber or plastic gastric tube inserted into the stomach under local anesthetic at the bedside. It can also be provided intravenously or through a tube inserted through the nose. It can be a short-term or long-term intervention.
* Palliative Comfort Care: The care (including pain and symptom control) of patients who are in the dying process due to an irreversible and fatal illness, disease or condition. The goal of palliative comfort care is to make the patient comfortable and meet his or her physical, spiritual and psychological needs during the final days of life.
* Passive Euthanasia: An act or the absence of an act that ―by intent or result ― causes the death of a patient.
* Physician-Assisted Suicide: When a medical doctor provides patients with the means to kill themselves.
* “Pulling The Plug”: A term used to include everything from turning off a ventilator to withdrawing medically assisted nutrition and hydration. It is better to avoid this term and specifically state what treatment and procedures you do or do not want.
* “Quality of Life”: A subjective, non-medical assessment made by others regarding the patient’s satisfaction with his or her present circumstances. Too often this phrase is used with the conclusion that a patient’s life is not worth living or preserving.
* Terminal: An irreversible and fatal disease, illness or condition. Although a patient may be diagnosed with a terminal condition and live for some time, this term generally refers to cases where the underlying cause of death cannot be reversed by medical technology and death is likely within six months, regardless of treatment or intervention.
* Ventilation: The process of using a handheld device for a short period of time or a machine called a ventilator or respirator for a longer period of time to help the patient to breathe.
* Talk to your family members about your medical decision-making philosophy before a medical crisis puts loved ones in a position to make decisions for you if you are incapacitated. To assist in this discussion, we recommend a complimentary online resource from Focus on the Family called “Discussing Your Medical Wishes: A Patient’s Guide.”
* Consider signing a Durable Power of Attorney for Health Care, which is a specific Advance Medical Directive document that names a health-care agent to make your medical decisions should you be unable to do so. This document is recommended over a “Living Will” declaration.
* The Patients’ Rights Council has developed a Durable Power of Attorney for Health Care document called the Protective Medical Decisions Document.
* For information about hospice care, see Hospice Patients Alliance.
* Another recommended resource is the Complete Guide to Caring for Aging Loved Ones, put together by Focus on the Family’s Physicians Resource Council. It includes a chapter on end-of-life decisions, as well as subjects, such as advance medical directives, assisted nutrition and hydration, do-not-resuscitate orders, ventilators and hospice care. You can order a copy by calling us at 1-800-232-6459 or by visiting our online Family Store.
NOTE: This information sheet does not constitute legal or medical advice. For professional counsel, please contact an attorney or physician.
Copyright © 2003, 3010, 2014 Focus on the Family. All rights reserved.