Introduction
Big issues—and big decisions—confront us when we think about the imminent death of a terminallyill loved one in our care. Among the emotional, legal and financial considerations are also questions regarding the type of medical assistance your loved one should receive as the end of life approaches. For example, if your loved one suddenly has difficulty breathing, will you allow a paramedic or an emergency room technician to administer CPR? And if CPR revives your loved one, yet he or she still can no longer breathe on his or her own, should you allow a machine—a respirator—to breathe for him or her?
A better understanding of cardiopulmonary resuscitation, or CPR, can be helpful when it comes to making this difficult choice before a crisis occurs. This Fact Sheet specifically addresses the process of CPR and describes the DNR (Do Not Resuscitate) form, the legal document used to indicate to medical professionals your—or your loved one’s—wishes. (For a more detailed discussion of the other issues involved in planning for the end of life, see the Family Caregiver Alliance Fact Sheet on End-of-Life Decision Making.)
CPR (Cardiopulmonary Resuscitation)
Consider the following scenario:
Nancy’s husband has had Alzheimer’s disease for eight years, and is now in the final stages of the illness. After a discussion of end-of-life issues with her family, Nancy has decided to “let nature take its course” if anything of an urgent medical nature happens to her husband — in other words, she does not want him to be put on life support. She has told her doctor of this decision, and he has concurred.
One night, Nancy wakes up to find her husband having trouble breathing. Reflexively, without thinking, she calls 911. By the time the paramedics arrive, her husband has stopped breathing completely. The paramedics leap to do their job: they immediately administer CPR and take him to the hospital. By the time Nancy arrives at the hospital, her husband is connected to a ventilator and numerous IVs. Unfortunately, this is exactly what she did not want for him.
Definition
Fully understanding Nancy’s scenario requires a deeper understanding of cardiopulmonary resuscitation. Simply put, CPR is the process of restarting the heartbeat and breathing after one or both has stopped. The first step involves creating an artificial heartbeat by pushing on the chest, and attempting to restore breathing by blowing into the person's mouth. A medical professional will then insert a tube through the mouth and down the airway to make the artificial breathing more efficient. Electric shocks may be given to the heart, and various drugs may be given through an intravenous line. If the heartbeat starts again but breathing is still not adequate, a machine called a ventilator may be employed to move air in and out of the person's lungs indefinitely.
On television, CPR is often depicted as the ultimate life-saving technique. However, television does not show this process quite accurately—in real life the process is more brutal. Pushing the center of the chest down about one and one-half inches, 100 times a minute for several minutes, causes pain, and may even break ribs, damage the liver, or create other significant problems. CPR produces a barely adequate heartbeat, and doing it more gently is not sufficient to circulate enough blood. Electric shocks and a tube in the throat are also harsh treatments, but may be essential to resuscitate someone.
CPR frequently can save a person's life, particularly in the case of some kinds of heart attacks and accidents an otherwise healthy person may experience. CPR is also most successful when the failure of heartbeat and breathing occurs in the hospital, in the Cardiac Care Unit (CCU). Nurses in the unit will instantly recognize the problem and begin sophisticated care.
However, when a person is in failing health from a serious and progressive illness, the heart and breathing will ultimately fail as a result of that illness. In such a circumstance, there is little chance that CPR will succeed at all. Any success will be temporary at best, because the person's weakened condition will soon cause the heartbeat and breathing to fail again.
Another possibility is that CPR may be only partially successful. If the heartbeat is restored but a person is still too weak to breathe on his or her own and remains too weak to do so, he or she may be on a ventilator for days, weeks, months or longer. Moreover, when breathing or heartbeat fails, the brain is rapidly deprived of oxygen. As a result, within seconds, the brain begins to fail (one loses consciousness), and within a very few minutes permanent damage to the brain occurs. If it takes more than those very few minutes to start effective CPR, the person will not fully recover. The brain damage may mean anything from some mental slowing and loss of memory to complete and permanent unconsciousness and dependency on a ventilator and sophisticated medical life support.
The Role of Emergency Help (Calling 911)
A call to 911 is a request for emergency help; the goal of those who respond to 911 calls is to protect life and property, and the people who respond expect to go to work doing what they are trained to do to accomplish that goal. If your house is on fire, the firefighters don't ask for permission to cut a hole in your roof and spray water all over your living room—they just do what is necessary to stop the fire from destroying your home.
Similarly, when a person's heartbeat and breathing have failed, the 911 responders are not prepared to have a long talk with you about the person's condition and what you think might be best to do. They know that any delay could mean brain damage, so they immediately start CPR and then take the person to the hospital. With one exception, which we will discuss in the next section, their rules require this, and it makes sense if you think about the purpose of the 911 system.
When Nancy called 911 in our scenario, the paramedics simply did what they are trained to do—they revived her husband. However, if Nancy and her doctor had completed a DNR form and kept it in the home, her husband would not have been resuscitated and/or connected to machines when he got to the hospital.
The Do Not Resuscitate (DNR) Form
The "Emergency Medical Systems Prehospital Do Not Resuscitate (DNR) Form" is a legal document that gives the 911 responders permission not to perform CPR. The DNR form is prepared in advance of any situation and kept at home. This prehospital DNR form lists the name of the person to whom it applies, and is signed by that person (or whoever represents that person if he or she is too ill to make medical decisions on his or her own behalf). It is also signed by the person’s doctor. Please note this is very important: the form is not valid until the doctor signs it.
The DNR is the only form that affects 911 responders; other documents, such as a Durable Power of Attorney for Health Care or some other Advanced Directives, do not.
If emergency personnel arrive to find a person whose heartbeat and breathing have failed or are failing, they will perform CPR unless they see a correctly completed DNR.
In light of this, the DNR form should be kept near the ill person's bed, perhaps on the wall, so it will be easy to find in case of emergency. When 911 responders see this form, they will still do anything they can to make the sick person comfortable, but they will not perform CPR. In the absence of a DNR form, they must do CPR. The DNR is the only form that gives you control over what they may do. (Note: A DNR may be reversed if you so desire.)
Choices
Why would one choose to prepare a DNR? Because, as we’ve discussed above, there are times when it may not make sense to perform CPR. When a person is becoming more and more sick, doctors may try various treatments to stop the illness, but eventually it may become clear that treatments are not having the desired effect. Other treatments might provide comfort, and might even partly control the disease, but a point may be reached where nothing will stop the person's decline. At this point, CPR may only prolong dying. Under these circumstances, you might feel there is little reason to attempt CPR. In fact, the original name of the DNR form was "DNAR" for "Do Not Attempt Resuscitation." This name recognized the fact that the form instructed the 911 responders not to undertake something that, despite the best efforts, would not work effectively in the long run. At most, the effort might put the sick person in the hospital, in pain and distress, for the last days of his or her life.
Having a DNR prepared may also relieve the caregiver of making a decision to turn off a machine, which can be an even more difficult decision psychologically.
People might choose to complete a DNR for another reason. As illness progresses, the quality of life declines. Being wheelchair-bound or bed-bound, needing to be fed by others, being in chronic distress of some sort, not being able to manage one's own bowel and urine functions, finding little left in one's life that gives enjoyment or satisfaction, feeling that one's life has become burdensome to others (even if they seem to bear that burden cheerfully)—all these can come to pass with failing health. Advanced age may also mean that most of one's friends and family of one's own generation have died. One may still feel a connection to younger people, but it is not the same. Often, one reaches a point where staying in this world is less attractive than going on to whatever one believes comes next. At this point in life one may realize, in a way younger people do not, that life must come to an end. And one may choose to let it end when it does—peacefully, without a last, frantic attempt at resuscitation.
(See the FCA Fact Sheet Holding On and Letting Go for more discussions about this issue).
Conclusion
When someone is suffering from a chronic illness, as opposed to an acute illness (the kind that usually requires a hospital visit or stay), the decline is often gradual. As a result, both caregivers and those in their care often forget to talk about the choices the chronically ill person would like to make regarding his or her health care. If you decide that you do not want CPR and are concerned about this decision, it might help to talk with your clergyperson. It is normal, instinctive, to try to save life no matter what, and some people are concerned that not doing everything possible to preserve life is the same as “killing” someone. But it can also simply mean respecting the end stage of a disease as the body shuts down.
There are no right and wrong answers to these questions, and until we face a situation like this, it is difficult to anticipate the kinds of choices we’d make. As we change throughout the course of an illness, our choices might also change. However, the more thoroughly family members have discussed these issues in advance of the need to make a critical decision, the easier it will be on both the person who is ill and those responsible for that person’s care. It is never too soon to start the conversation.
Credits
Jennings, Bruce, et al., “Ethical Challenges of Chronic Illness,” Hastings Center Report, Special Supplement, February/March 1988, pgs. 1-16.
McLean, Margaret, “Confronting the Ultimate Questions,” Issues in Ethics, Winter, 1997, Vol. 8, No. 1, pgs. 8-9.
Moss, Alvin, “Discussing Resuscitation Status with Patients and Families,” The Journal of Clinical Ethics, Summer, 1993, Vol. 4, No. 2, pgs. 180-182.
Murphy, Donald, et al., “Outcomes of Cardiopulmonary Resuscitation in the Elderly,” Annals of Internal Medicine, August, 1989, Vol. III, No. 3, pgs. 199-205.
Nulland, Sherwin, How We Die, Alfred A. Knopf, 1994.
Shannon, Thomas and Charles Faso, Let Them Go Free, Sheed and Ward, 1985.
Zawacki, Bruce, “The ‘Futility Debate’ and the Management of Gordian Knots,” The Journal of Clinical Ethics, Summer, 1995, Vol. 6, No. 2, pgs. 112-126.
Resources
Family Caregiver Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
(415) 434-3388
(800) 445-8106
Web Site: www.caregiver.org
E-mail: info@caregiver.org
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.
Through its National Center on Caregiving, FCA offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.
For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer's disease, stroke, head injury, Parkinson's and other debilitating disorders that strike adults.
Alzheimer’s Association
919 North Michigan Ave., Suite 1100
Chicago, IL 60611
(800) 272-3900
www.alz.org
Center to Improve Care of the Dying
www.medicaring.org
Compassion in Dying
1275 Fourth St. #615
Santa Rosa, CA 95404
(707) 544-5993
www.compassionindying.org
Hospice Foundation of America
2001 S St. NW, #300
Washington DC, 20009
(800) 854-3402
www.hospicefoundation.org
Hospice Patients Alliance
www.hospicepatients.org
Improving Care for the Dying
www.growthhouse.org
National Hospice Foundation
(800) 338-8619
www.hospiceinfo.org
National Hospice and Palliative Care Organization
A Pathway for Patients and Families Facing Terminal Disease
1700 Diagonal Rd. Suite 625
Alexandria, VA 22314
(703) 837-1500
www.nhpco.org
Palliative Excellence in Alzheimer’s Care Efforts (PEACE)
5841 South Maryland Ave.
Chicago, IL 60637
(773) 702-0102
Partnership for Caring, Inc
1620 Eye St. NW, Suite 202
Washington DC 20006
(800) 989-9455
www.partnershipforcaring.org
www.lastacts.org
Dying Unafraid
Fran Johns
Synergistic Press
3965 Sacramento Street
San Francisco, CA 94118
(415) 387-8180
www.synergisticbooks.com
Finding Your WayandTalking it Over
Sacramento Health Care Decisions
10540 White Rock Rd, Suite 135
Rancho Cordova, CA 95670
(916) 851-2828
www.sachealthdecisions.org
Five Wishes
Aging with Dignity
P O Box 1661
Tallahassee, FL 32302
(888) 5-WISHES
www.agingwithdignity.org/5wishes.html
Five Wishes is a document that helps you express how you want to be treated in the event you become seriously ill and unable to speak for yourself.
Handbook for Mortals
Joanne Lynn, MD and Joan Harrold, MD
Americans for Better Care of the Dying
4200 Wisconsin Ave. NW, Suite 418
Washington DC, 20016
(202) 895-2660
www.abcd-caring.org
Prepared by Family Caregiver Alliance. Reviewed by John Neville, MD, Spiritual Care Coordinator, Pathways Hospice. Funding provided by the Older Americans Act, administered by the San Francisco Office on the Aging. ©2003 All Rights Reserved.
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