Link back to index.html
Choosing Treatment Options in Dying
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.
Ten years ago I was privileged to care for Jimmy, who was dying from a malignant brain tumor in the prime of his life, age thirty-four. He had been married only ten years, and he was anguished about the welfare of his young wife, and their two sons, who were eight and nine.
Jimmy was an engineer. He was an intensely practical person, an expert at collecting, processing, and successfully applying information. He approached his illness in the same way. “Give me the facts!” he would say. But his tender heart showed through his efficiency when he talked about his wife or when his sons came into his room for their “cuddle time.”
Shortly after his admission to hospice, while Debbie was out of the room, he told me, “I want to know everything. Just exactly what should I expect from this illness and what can I do about it?” I took a legal-size sheet of paper and drew a line lengthwise down the middle. At the top of one column I wrote FIXABLE/ WORKABLE. Under this heading I listed symptoms such as pain, constipation, and sleep disturbances. I also noted concerns about the family’s future and about the children’s fears and grief issues, help for his wife as his care needs increased, and grief support for the family after he died. His hospice team could offer expert, effective help to alleviate all these symptoms and concerns.
Above the other column I wrote NOT FIXABLE/ NOT WORKABLE. This list included his increasing neurological decline: his right arm and leg would become weaker, he would become sleepier, and he would spend increasing amounts of time in bed until he was there full time. He might get an infection or slip into a coma that would lead to his death.
I explained that we would help him cope with the problems that were not fixable or workable, and that we would use medications to minimize them as much as possible, but that we would focus primarily on the things in his life that were fixable or workable. We would strive to maintain a good quality of life so that he could enjoy being with his family and use this important time as creatively and meaningfully as possible. We would also give him as many choices and as much control over what was happening to him as possible.
Jimmy thought about all this for a long moment. Finally, with resignation in his voice, he said, “Dying from this illness is not what I would choose, but it sounds like there is a workable plan. If that’s what’s involved, I think I can do it!” The analytical engineer had reviewed the information and come to a practical decision. I was touched to the core by the poignancy of his summing up— not “I want to,” but “If I have to, I can.”
I asked if I could review these lists with his wife, and he agreed. There was much more to be discussed, but I knew Jimmy would ask for that information when he was ready.
On my next visit, Jimmy said he had a few questions for me. “Last time, you suggested that I could have some choices about my illness and treatments. Go over that with me, would you?”
And so I began. “Most terminal illnesses are like a journey down I-95. You can choose to stay on it from its start in Maine until it runs out at the tip of Florida and the journey is over. Or you can choose to take an earlier exit and end the journey sooner.” I could see that Jimmy was hanging on every word.
“The complications and problems created by the illness are like the exits off I-95. Some of them are little problems needing only small interventions to keep you on your journey. Some are more serious. They require bigger interventions if you want to continue on. Exits are really opportunities. You can choose the treatments that will allow you to continue, or you can choose to allow the journey to end on your terms.”
Jimmy’s face lit up. “I get it!” he exclaimed. “On some level I can control this disease rather than let it completely dominate me.” Then he continued more slowly, “With an illness like this, I never thought I could do it on my own terms. This really helps me deal with my fears and the feeling of being so helpless.”
I asked him what he feared about his illness.
“That my sons will be traumatized if they see me having seizures,” he said. “And I’d rather not be alive if I can’t think and respond to my family.”
I assured him that we had good medications to control his seizures. He would be on steroids to decrease swelling in his brain, and that should help keep his mind clear as long as possible. The steroids could be decreased or stopped if and when he wished, and we could keep him comfortable, but without those medications he would quickly deteriorate and die. We could transfer him to our hospice inpatient unit for his last few days if it became too difficult or upsetting for his wife and sons.
“Well,” he said, “that gives me a lot to think about. But I want to go back to what you said about exits. Tell me more about how that works.”
“An infection such as pneumonia is one. You can choose to treat it, or you can let it take its course. Bleeding into your brain, as happens in a stroke, is another. Not eating and drinking— either by choice or because you become too weak to swallow— is a third. Stopping the medications and letting the seizures take over is a fourth. That’s an exit I probably would not recommend, because even though you wouldn’t feel anything, it can be very upsetting for your family to see,” I explained.
“That’s a lot to think about,” Jimmy said again. “I want to talk this all over with Debbie. If we have questions, can you go over everything again with us?”
“Of course!” I replied. “As many times as you need. And remember, no decision you make is set in stone. You can try a course of action, then change your mind and reverse it. But it’s important that you understand what’s happening, the available interventions, and the benefits and burdens of your choices.
“My job is to give you as much information as you want and need,” I went on. “Some people don’t want any information, so I wouldn’t be having this conversation with them.”
“Well, I meant it when I said I want to know everything. Please let me know if you see any exits coming along.”
I promised I would be vigilant and keep him informed. He seemed relieved.
Accustomed as we are to traditional medicine, many people— especially family members— are shocked at the concept of not treating or trying to cure every complication that occurs. “What do you mean, we don’t have to treat an infection?” they ask me. “Isn’t that murder?”
This is a difficult concept for all concerned, but there are some very important distinctions here. Doing anything to a patient that hastens his or her death, even at the patient’s request, is called active euthanasia or mercy killing, and it is against the law throughout North America. Physician-assisted suicide, in which a physician knowingly prescribes medication that a patient takes to end his or her life, is legal only in the state of Oregon, under very tight regulation. Neither is acceptable practice in any hospice or other palliative care program.
What I discussed with Jimmy is quite different. It is choosing not to use interventions that will artificially prolong the process of dying; instead, we allow a natural death to occur. While this is sometimes called passive euthanasia, it is not illegal in any state. It is often an opportunity for the dying to control the difficulty and duration of their journey.
Why do some patients choose an earlier exit, even with all the support we offer them? This is what they tell me:
“I’m tired and I don’t want to do this anymore.”
“The harder I try, the worse it gets. I’ve had enough.”
“Why continue to go through this when it’s definitely killing me, but it seems to be hurting my family, too?”
“What good is to be gained by continuing to fight?”
“I want to spare my wife and children any more anguish.”
“There is no quality of life anymore.”
Many patients, like Jimmy, are deeply comforted by the possibility of choosing how long to continue down this road on their own terms and for their own reasons.
Months later, Jimmy was in bed full time. He had periods of confusion and was getting very sleepy. He was losing his ability to interact clearly with Debbie and the boys, and he needed more and more help with bathing, toileting, and eating. I also noticed that he had started “squirreling” food and crushed pills in his cheeks. This is a common behavior for patients with advancing brain disease, but I was concerned that he might breathe some of this material into his lungs, which could cause aspiration pneumonia.
I sensed a change in Jimmy’s emotional journey as well. When he was mentally clear, he talked more about dying, and he told me that he was having very vivid dreams about his beloved grandparents, who both had been dead for many years.
“They’re waiting for me,” he’d say with a dreamy smile. He seemed to be detaching and drifting away from the here and now.
During each visit, I listened to Jimmy’s heart and lungs with my stethoscope. One day, I heard the extra mucus and the fine distant rubbing sounds of a possible early pneumonia in one lung. When I called Jimmy’s doctor with this report, he asked me to find out what Jimmy and Debbie wanted to do— or not do— about treatment. He would support whatever they chose. I went back to Jimmy’s room.
“Jimmy, I’m picking up some changes and have reported them to your doctor,” I told him gently. “Would you like to know what they are?”
Although early on Jimmy had clearly stated his desire to know everything, I always check, every single time, just in case a patient changes his mind or is too frightened to hear bad news. Jimmy nodded, squinting and blinking as if to clear away cobwebs in his head.
“I hear the kind of congestion in your lungs that we worry about,” I said, “the kind that can become pneumonia. This is a big change.” I softly rubbed his arm as I spoke.
“An exit?” he mumbled.
“It could be,” I said gently.
“Oh, good… I’m so… so tired,” he murmured. “I want to be done with this…. Talk to Deb… she okay if I stop fighting?”
I spent a long time in the kitchen holding Debbie as she wept on my shoulder.
“We’ve talked a lot about this,” she said. “It was fine as long as it was next year or next month or next week, but now it’s right here and I’m not ready.”
“I know, sweetie,” I said, “I know.”
“I can’t bear to see him go downhill, and I promised I would support his choice to stay in charge. But it’s so hard. Is there really such a thing as being ready?”
I sighed. “Intellectually, I suppose it’s possible,” I said. “But the loving heart is never really ready to let go and say goodbye.”
Later Debbie and I sat together next to Jimmy’s bed. I reviewed how we would keep him comfortable so he could have an easy, peaceful death. I offered to transfer him to the hospice inpatient unit if that’s what they wanted and if a bed was available.
“No!” said Debbie emphatically. “I want him here with us. We’ve shared this journey so far, and the seizures he was afraid of never happened. The boys and I are proud of our teamwork, and my parents are on their way to help us. It’s important for our family to do this together. We want him here!”
“Okay,” Jimmy murmured dreamily. “We have a plan.” He drifted off to sleep holding Debbie’s hand.
Jimmy died four days later, as peacefully and comfortably as he had hoped. His hospital bed had been placed right up against his and Debbie’s bed, and he died with Debbie and the boys all tangled up sleeping in their “cuddles,” touching him, and dreaming with him as he breathed his last.
At the funeral Debbie told me, “It’s so unreal that he’s gone, but I’ll never be as afraid of dying as I was before we took this journey together. Jimmy taught us so much, and the boys and I are so grateful to him.”
Minor Complications Can Cause Major Problems
Many people are surprised to learn that the dying rarely die of their actual disease, such as cancer, but rather succumb to some problem caused by the ravages of their illness combined with their weakened state. Common complications include infections, changes in blood chemistry that can cause internal bleeding or inadequate oxygenation, and an imbalance in electrolytes or other body chemicals. For a healthy person, some of these problems would be a discomfort or an inconvenience, but they could be resolved by medical treatment. For the dying, these complications can be fatal.
A few years ago I developed pneumonia, which meant that I had to take five days off from work. After two days, the antibiotic kicked in, and I felt so much better that I decided to paint one of my bathrooms. I was a healthy person who had a case of pneumonia. It was an inconvenience, but a simple, direct treatment cured me.
Pneumonia for a dying person, however, is another story, and it can be caused by problems that healthy people don’t have. The dying person’s ability to swallow efficiently is often decreased by weakness, and tiny amounts of food or fluids can be inhaled into the lungs as the patient eats or drinks. The bacteria that cause pneumonia are often in the air around us, and the disease can develop easily if the lungs contain fluid, bits of food, or mucus— all of which offer a good environment for bacteria to grow. Add to that an immune system already compromised by illness or by treatments such as chemotherapy or radiation. This is why pneumonia in a seriously ill or dying person is a common cause of death.
When complications such as infection and internal bleeding occur, patients (or their designated health care proxies) are faced with a choice. They may decide to aggressively treat such problems in hopes of curing them, or they can consider not treating the root cause of these problems. For example, antibiotics may be used to fight a bacterial infection, or blood transfusions may be given to treat the anemia that results from ongoing blood loss. But both are temporary reprieves at best. These problems will continue to arise because of the progressive illness and the increasing debilitation of the patient. On the other hand, those who choose not to treat see these serious complications as an opportunity “to be done with this illness.” Then comfort care is the most logical and compassionate choice.
It’s surprising to most people that a patient can die peacefully and comfortably from pneumonia (and most other infections) or internal bleeding if good, aggressive comfort care is used. I’ll describe how the two choices can play out in a case like Jimmy’s.
The discomforts from pneumonia are caused by fever from the infection and by increasing mucus in the lungs that leads to difficulty breathing and anxiety from a sense of “air hunger.” This is often followed by general respiratory deterioration and death, since not enough oxygen is being carried to the body’s vital organs.
Curative care might involve hospitalization, frequent needle sticks for blood work, multiple X-rays, continuous oxygen in the nose, anti-inflammatory medications to reduce fever, IVs, antibiotics, and inhaled medications given through a nebulizer. If these treatments fail, the patient is put on a respirator. The decision to discontinue these extraordinary means will have to be made by the family or by the person who holds the patient’s medical power of attorney (see Appendix A). Making this decision is traumatic for most people.
In terminally ill patients, pneumonia is frequently stubborn and often can’t be controlled even with aggressive interventions. More often than not, the patient deteriorates and dies regardless, but in the hospital rather than in his own bed at home.
Palliative care for terminally ill people with pneumonia is vastly different and significantly more compassionate. We use anti-inflammatory medications as well as cool cloths and bathing to remove the discomfort of the fever. We can give the patient oxygen through a nasal cannula (short, tiny tubes in his nose) when and if he wants it. Medications to dry up lung secretions and ease breathing can be administered by mouth, by suppositories, or through skin patches. A few drops of liquid pain medication under the tongue can slow and strengthen the breathing. Medications can also be given under the tongue to eliminate the anxiety caused by “air hunger.” No needles, no IVs, no blood work, no strangers providing care, no hospital. These easy treatments can all be given at home.
Since antibiotics aren’t used, the infection persists and most often leads to death. But it is a peaceful and comfortable death. The patient begins to sleep more and more. There may be some confusion, which is followed by a brief coma and then death, usually within a few days. Often a death like this is so quiet and gentle that the people sitting around the patient’s bed don’t even know that it has occurred until they realize that a few minutes have gone by since the patient took his or her last breath.
THE BOTTOM LINE
Dying, like a highway journey, has potential early exits you can choose, to control the length, duration, and comfort of the journey called dying. [63-72]
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
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:
• Is this person honest and trustworthy enough to understand your wishes and values?
• Will this person stand firm against your family and billing organizations that may not have your best interests at heart?
• Will this person take time and gather the information necessary to make decisions in keeping with your wishes?
• Is this person available and able to keep up with your bills and financial needs?
• Can this person recognize that family stress and grief reactions (such as overspending for the funeral) often affect financial issues?
• Can this person be alert to the potential for greed?
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:
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. [316-318]
Link back to index.html