Link back to index.html
Deciding About a Do-Not-Resuscitate Order (DNR)
All the passages below are taken from the book “Final Journeys: a Practical Guide for Bring Care and Comfort at the End of Life” by Maggie Callanan. It was published in 2008.
One of the most difficult choices facing a dying person is whether or not he wants to have cardiopulmonary resuscitation (CPR) if his heart or breathing stops. Some people choose not to deal with this issue, or delay too long making this decision; in either case, it must then be made for them by their spouse or family. This is an upsetting choice at best, but it is even harder if we have to make it for someone else, and in the midst of a crisis.
If a do-not-resuscitate form is not signed, or if the doctor does not know the patient’s wishes, CPR will be attempted. One of the kindest gifts a terminally ill person can give his or her loved ones is to make this decision early, sign the form, and let everyone know it’s been done. This spares the patient’s loved ones from being forced to make this frightening and potentially guilt-ridden decision themselves.
Because of cardiopulmonary resuscitation, many people with terminal illnesses today have to experience dying a second or even a third time, often without ever having regained consciousness. This causes undue trauma for the patient and the family. It is a death without comfort, peace, or dignity. And typically the family is excluded from being there with the one they love.
CPR is an attempt to restart the heart and lungs after they have stopped. It assumes that these critical organs can be restarted and kept working well enough to sustain life. During my first decade in nursing I worked in emergency rooms and intensive care units, initiating and participating in CPR more times than I can count. You have the right to want CPR, but because I believe in true informed consent, let me tell you what you would be choosing.
Time is of the essence when a person’s heart stops: there is a critical window of opportunity—-about four minutes—-to restart the heart before irreparable brain damage occurs from lack of oxygen. The lifeless person is placed on a firm surface like a wide board. An IV is started anywhere a vein can be found. A large breathing tube is inserted down the throat to provide an airway so that a respirator can force oxygen into the lungs. Someone pumps down firmly with the palms of both hands on the patient’s sternum or breastbone in a rhythmic pattern that forces blood from the heart to the other organs. This helps the chambers of the heart fill and empty again and again, artificially duplicating the heart’s rhythm. It is not uncommon to break some of the patient’s ribs while bearing down on the breastbone. Although this is a concern, it is not an important focus: the intention is to save a “savable” life.
In an attempt to shock the heart back into pumping on its own, the patient will be given one or more strong shocks by electrical paddles placed on either side of the chest. The shocks are so strong that everybody present must step back so as not to receive a shock from the bed as well. Simultaneously, medications are pushed through the IV tubes or injected directly into the heart muscle. Machines beep and hiss. Medical personnel often must shout their orders to be heard above the din. Meanwhile, the terrified family members are forced to wait in another room.
If ineffective, CPR is stopped and the time of death recorded. If successful, the patient and all the attached life support machines are sent to the intensive care unit for close monitoring, with hopes that at some point the patient may improve, regain consciousness, and be able to sustain life without the respirator. Some do, some never do, and some have CPR a number of times before they die, never having regained consciousness.
When CPR was introduced some forty years ago, it was intended as an emergency intervention to save a person whose dying was reversible: in cases such as life-threatening allergic reactions, near drowning, or heart attack. It was never intended for people with terminal illnesses, whose dying is inevitable and irreversible. In a terminal illness, CPR prolongs the dying, not the living.
Many people have a distorted or inaccurate view of what this intervention involves and what the outcomes might be. I’ve had patients say to me, “I just want a little CPR— maybe a few thumps on my chest,” or “I want you to do it for a little while, but I don’t want to go to the hospital,” or “I’ll let you know when I’ve had enough.”
As technology advances, our expectations of what we are able to do to keep a failing human body alive increase. CPR is now the expected intervention in all situations unless a do-not-resuscitate (DNR) order is signed by the patient and a physician. A critical reason to have a living will and a medical power of attorney is to have your wishes known and legally documented before you and your family become victims of this situation. (See Appendix A, “Your Strongest Tools Are Made of Paper.”)
Delphinium’s serene smile was a poignant contrast to the long and difficult course her disease had taken. Diagnosed fifteen years earlier, her breast cancer had been driven into remission several times, only to return. Now she was clearly dying. But with her sweet expression, she seemed to bob above the devastation her losing battle had caused.
“What a pretty and unusual name you have,” I said upon meeting her.
She chuckled. “It was my grandmother’s favorite flower. But please, just call me Della.”
“You seem at peace with what’s going on with you,” I said cautiously, not entirely clear whether Della’s serenity masked denial or was truly typical for her.
“I’ve fought this as long as I want to and I know that the good Lord is calling me home, so I’m ready to go and I don’t want to slow this journey down. My husband, Dwayne, is the problem. He thinks we need to keep pushing the doctors for a cure. After all this time, he still won’t get it. Lord, the man is thickheaded!” She rolled her eyes and sighed.
“I see here on your chart that you have already signed a do-not-resuscitate order. I also see that you have appointed Dwayne to hold your durable medical power of attorney. Does he understand your wishes and will he follow them? Will that be a problem for him?”
“Better not be, or I’ll haunt him from the grave. He was right here sitting with me when Martha, the hospice social worker, explained all the forms. He knows how I feel. I don’t want to be brought back or kept alive with machines. I’m ready to go home to Jesus! Enough is enough!”
I spoke to Dwayne about my concerns.
“Whatever Della wants, Della gets!” he said with a big, jovial smile.
Della’s course of care with hospice went very smoothly for seven months. We were able to provide good symptom control for her occasional nausea and for the bone pain where her cancer had spread to her spine and ribs. Even though she became increasingly weaker, she enjoyed time with her children, foster children, and impressively large extended family. Hers was a busy, happy home, and she was content and peaceful there.
She had been in bed full time for about two weeks when it became apparent that her final days were approaching. Sleepiness turned into a semi-coma that wrapped itself around her like a big, fluffy quilt. She’d periodically drift awake with a sweet smile, then peacefully drift off again.
Then I received a call from Dwayne. He wanted to talk about Della’s condition. I drove to their home with Martha, the social worker on my team.
When we walked in, Dwayne announced, “Okay, Della’s out of her head now, so I make the decisions.”
His words and his new assertive attitude made me nervous.
“I want to have everything done to save her,” he went on. “I don’t think she was in her right mind when she signed that form, but no matter—-I’m in charge now!”
Martha had been a witness to Della’s DNR form, and she told Dwayne that Della was clearly mentally competent when she signed it. Entrusting him with power of attorney showed that she expected him to carry out her wishes. I further explained that Della’s life expectancy was now probably measured in days. If he insisted on resuscitation and life support, we’d have to transfer her to the hospital, nearly twenty miles away. CPR cannot be properly done and continued without the machines and people on the critical care team. We could not provide that at home.
I reminded him that with the cancer in her ribs and the bones of her spine, the CPR itself would probably cause multiple fractures. Even if it was successful, she would probably die again within minutes or hours—-the disease was so advanced that continuing to live was not possible.
We also pointed out that with the distance to the hospital, it would be hard for her children and other relatives to spend time with her. Even though she was in and out of consciousness, she would miss their loving presence.
But there was nothing we or the very concerned physician could do to dissuade Dwayne. So an ambulance was called to take Della to the hospital. She was in the hospital for five days before her heart stopped. The team worked for thirty minutes to resuscitate her and finally regained a heartbeat, but she lived in a coma for only about forty-five minutes, then arrested again. Dwayne was there and demanded a second resuscitation attempt. After forty minutes it failed, and Della was pronounced dead.
I saw the doctor a few weeks later when I was at the hospital visiting a patient who had broken an arm in a fall out of bed. When I asked how it had gone with Della, he shook his head.
“What a sad way for such a sweet lady to die,” he said. “She’d been so careful to make sure her wishes were known. But she should have chosen someone to hold her medical power of attorney who shared her philosophy.” It is a sad fact that once the patient can no longer speak for him- or herself, the person with medical power of attorney can override the patient’s previous written orders, and there is nothing the medical or hospice team can do about it. So choose that person carefully, and share your living will with as many people as you feel would support your wishes.
Out-of-Hospital DNR Orders
For people who are seriously or terminally ill at home, the issue of unwanted treatment has an added twist. Suppose the patient slides off the side of the bed and lands on the floor. Instinctively, the caregiver calls 911 for assistance to get the patient back into bed. But by dialing that number, the caregiver has set into motion a legal process that is beyond the patient’s or family’s control. The paramedics who arrive must do everything in their power to save the patient’s life. They are legally mandated to do so. If their assessment indicates that the person on the floor needs an IV, resuscitation, or other treatment, they will provide them and take the person to the hospital, regardless of the patient’s or family’s wishes.
Back in the early 1980s, I had a delightful German gentleman, Gregor, as my patient. He had colon cancer that had spread to his liver. He was rail thin and jaundiced, with a yellow cast to the skin and eyes. His abdomen was so swollen with fluid (a condition called ascites) that he appeared pregnant. Despite his sickly appearance, Gregor was still able to function quite well, and his solid, rosy wife, Gerta, was determined to maintain the rituals he enjoyed for as long as possible.
Gregor had had a lifelong seizure disorder, unrelated to his cancer, that had been well controlled with medication. He rarely seized, and when he did, Gerta knew just what to do.
One of Gregor’s favorite rituals was to go for a car ride each afternoon. On a particularly balmy spring day, just as they pulled into the driveway after a nice outing, Gregor had a strong seizure. Gerta calmly made sure he was safe and wouldn’t get hurt and waited for it to end by itself. When it did, Gregor was typically disoriented and groggy, and he had somehow gotten wedged in an awkward position between the dashboard, the front seat, and the gearshift. Afraid that she would hurt him if she tried to pull him out, Gerta called 911 for help.
The paramedics arrived quickly with sirens screaming, noted how sick Gregor looked, pulled him from the car, put him on a stretcher, and loaded him into an ambulance. Greta protested loudly: she’d only wanted to get him into the house. Gregor had made it quite clear to her that he never wanted to go back to the hospital. She had promised him that he would stay at home.
The paramedics had already started an IV and were preparing to leave for the hospital when I returned Gerta’s frantic page. I explained Gregor’s status: he was a hospice patient who didn’t want to be hospitalized again. The paramedic responded, “I’m sorry, miss, but without a signed order from a doctor, we have to take him. It’s the law.”
Situations like this were the basis for the creation of the out-of-hospital do-not-resuscitate (DNR) form, which is available through your doctor or hospice organization. This form enables patients to get quick and selective help as needed, without the risk of having interventions they don’t want or won’t benefit by. It does not take away any of a patient’s power to choose the treatments he or she needs and wants. It simply puts the control firmly back into the patient’s or caregiver’s hands.
Some people are afraid to have a do-not-resuscitate form in their homes. Will they be denied care if their injury is fixable, such as a broken arm? Any fixable injury will be fixed, DNR form or not. The DNR form is for resuscitation and life support treatments only.
You don’t have to worry that the DNR order will override you if you change your mind and decide you want aggressive life support after all. In that case, just put the DNR form away and don’t show it. Your verbal wishes always override your written wishes, but to date, the form is the only way you have control over the 911 system. It does not take anything away, but it ensures that you won’t go to the hospital if you don’t want to go.
THE BOTTOM LINE
You have the right to choose CPR, but before you make this choice, be sure you really understand its benefits and burdens. [73-80]
Your Strongest Tools Are Made of Paper: Advance Directives
Although none of us get out of this world alive, only 10 percent of us die suddenly, without any warning. What that means is that 90 percent of us have the opportunity to think ahead, plan ahead, and make our wishes known for our unique last chapter.
PUT YOUR PLANS IN WRITING
Each family member involved
Your designated decision maker
Remember, you can always change your mind. As long as you are mentally competent, your verbal wishes always override your written wishes.
IMPORTANT DOCUMENTS YOU SHOULD HAVE
Health Care Power of Attorney
A health care power of attorney, or HCPOA (also known as a durable medical power of attorney, a durable power of attorney for health care, or a health care proxy) is the document that identifies the person you choose who understands your wishes and will make health care decisions according to your wishes if you are unable to do so yourself. This need not be a relative. By law, in most states, one or two physicians must certify that you are unable to make these decisions before your HCPOA authority is recognized legally. It is wise to have a backup HCPOA in the event your designated HCPOA is unable to carry out these duties. Your HCPOA has no legal rights to make financial decisions for you or access your money. It is helpful, but not required, to seek legal assistance with your HCPOA, but you will need to have your HCPOA document witnessed (by a non–family member or someone who will not benefit from your estate) and notarized. In some medical facilities verbally appointing a health care proxy is not enough and a written HCPOA is required.
Important points to consider before choosing your HCPOA:
Power of Attorney for Finances
This is the legal document necessary to allow someone who does not already have the right to access your bank accounts and other financial accounts to pay your bills and act on your behalf financially only if you are unable to do so or choose not to do so yourself. This person can only make financial decisions for you, not health care decisions.
Important characteristics to consider before choosing someone to hold your power of attorney for finances:
In this document you state your wishes about life-prolonging or-sustaining treatments in the event you become terminally ill or could not benefit from these treatments. You may list as many treatments as you wish and be as specific as needed. You may qualify your choices; for example, “I only want antibiotics in pill form—-no needles or IVs—-if need be,” or “I want any artificial feedings discontinued if I don’t gain weight or show improvement in my condition in two weeks.” As laws about advance directives vary from state to state, it is helpful, but not required, to seek legal assistance in drawing up your living will. It should be witnessed (by a non–family member or anyone else who would not benefit by your dying or your estate) and notarized.
Do-Not-Resucitate (DNR) Form
In many states your living will and/or your health care power of attorney is not recognized by the paramedics who will come if you dial 911. What most people don’t understand is that by dialing 911, you have taken step one of a legal process that can only be stopped by the order of a physician. The 911 system is a state-mandated system established to save lives at whatever cost. Once 911 is called, you cannot, by law, stop or interrupt what they do—- even in your own home. In some states the only legal document that will give you control over the 911 system is the state-generated do-not-resuscitate form, signed by your physician. It is important to check the requirements of your state. Your local hospice or fire department with ambulance service can clarify this. Once you have this form, it must be kept in a readily visible place and should be with the dying person anytime he or she leaves the home—-perhaps in a pocket or wallet. The safest way to avoid unwanted treatments, such as cardiopulmonary resuscitation or respirators, is not to call 911 to begin with. If you are a hospice patient, call hospice. They will send help and direct you what to do.
Last Will and Testament
Your will is a legal document that states your desires for the disbursement or disposal of your tangible goods and property. At death your wishes will be enforced by your executor, a person you appoint or hired to do this after you die.
A point to consider: if you have an estate large enough to pay a lawyer to prepare a will and appoint an executor, hire someone rather than asking a family member to do this. The burden of grief is difficult enough; often families are ripped apart by conflicts over what is and is not inherited and by whom. This puts an executor who is a family member in a very difficult position. Grieving is a time for families to pull together and support each other, not be torn apart in conflict.
The Ethical Will
Common in Judaism, the ethical will has been used since the eleventh century. It is typically a letter written by the dying person as a way to share last thoughts, hopes, and principles of moral behavior with those who will be left behind. It often contains an overview of the person’s life story, including the wisdom gained and lessons learned during that life. Basically, the message to the family is something like: “This is who I am, where I came from, what I’ve learned along the way, and what wisdom I wish to leave to each of you.” It affords a unique opportunity of a life review that is shared with loved ones.
Five Wishes is a new form of advance directive that looks to all of a person’s needs: medical, personal, emotional, and spiritual. It also encourages you to discuss your wishes with your family and physician.
Five Wishes lets your family and doctors know:
1. Which person you want to make health care decisions for you when you can’t make them
2. The kind of medical treatment you want or don’t want
3. How comfortable you want to be
4. How you want people to treat you
5. What you want your loved ones to know
Five Wishes was written with the help of the American Bar Association’s Commission on Law and Aging and is valid under the laws of forty states and the District of Columbia. It is easy to use. All you have to do is check a box, circle a direction, or write a few sentences. For more details, and to preview the document, go to www.agingwithdignity.org/5wishes.htm.
You may order a copy online or by phone or mail:
Aging with Dignity
P.O. Box 1661
Tallahassee, FL 32302-1661
Toll free: 888-5WISHES (888-594-7437)
ORGANIZE YOUR INFORMATION
Last, but by no means least, is what you do with all the information and documents you have gathered and completed. It is of great help to you, your family, and other important people if you put all this information in one, readily available place, such as in a special notebook. What’s important is that everyone who needs to know this information knows where it is kept and what your notebook contains. The originals of your legal documents should be kept with your attorney and/or in your safe-deposit box. Be sure someone else is on the signature card of your safe-deposit box and can have access to it if you are unable. Be sure to put a copy of the card in your special notebook. It is also wise to put a card in your wallet with or next to your identification indicating that you have completed advance directives and where they can be located in case of emergency if you are unable to speak for yourself.
It is often difficult to know when it’s time to talk to the important people in your life about your concerns and desires. Involving them in this process, or just asking them to look through your notebook when it’s completed, can be a very helpful way to open a dialogue about your wishes, needs, and plans. It is so much easier and less emotional to have these discussions when you are not in the middle of a crisis and dying is a remote concept of the future. Ideally, we would have all these discussion with each other before we are even ill.
Only 25 percent of the population have taken advantage of these wonderful legal tools. By taking advantage of them, you have given yourself peace of mind and given your family and friends a most loving gift. [311-318]
Link back to index.html