Personal Transition FAQs
I just found out that my disease/condition is terminal. What do I do?
Ask yourself what your goals are as you enter into the final phase of life. Do you want:
to continue on exactly as before, with no thought of what will come?
to pursue aggressive care and treatment?
to allow nature to take its course, without requesting heroic measures or life-extending technologies?
to take complete charge of your care?
to let someone else decide what’s best for you?
The decision is yours to make, and whatever you decide is correct for you. You have the right to make any and all decisions concerning the way you die. No one can take the right to make those decisions away from you, but first you must claim that right.
Whether or not you’ve decided to participate in your care, and whether or not you’ve learned all you can, you have the right to expect continuing medical care, even if your goals change from month to month, week to week, or day to day.
You may make one decision when you first get the diagnosis and quite a different one after six months of chemotherapy. You may begin by insisting on "cure" goals and later realize that a cure is not possible and choose to adopt "comfort" goals. Perhaps you’ll move in the other direction, changing your "do not resuscitate" (DNR) order to "do everything possible to keep me alive." Your latest decision is the only one that counts. You have the right to change your mind, and your changes of mind should be honored.
What if I don’t want to live on machines?
If you find it difficult to talk about your wishes, you can express them on paper via documents known as Advance Directives or Durable Power of Attorney for Health Care. These documents speak for you when you cannot. They allow you to specify the level of treatment you wish to receive, anything from full heroic measures to nothing but painkillers to keep you comfortable as you pass on. You can also designate a proxy, a person who will make decisions for you when you cannot. Unfortunately, having an Advance Directive may not be binding if your family does not agree with your wishes.
It’s important to select a strong representative to safeguard your wishes, someone who will stand up for you, under pressure, even if they disagree with your decision. Your first instinct may be to assign that responsibility to the person closest to you, but that person is not always strong or decisive enough to carry out your requests. It’s also vital that you discuss your wishes with this person before designating him or her as your proxy. Express your feelings clearly. Let her know that you consider her help to be an act of love. Emphasize that she is giving you something, not taking anything away. Emphasize that the disease will kill you, not the directives, not the decision she may be called upon to make.
Make sure your proxy has a copy of your Advanced Directives, and also give a copy to your doctor to place in your chart when you go to the hospital. Let your family know where they can find it quickly and easily. Bring your family together for a discussion early on in the disease process, or before you even get sick. Show them your Advanced Directives, let them hear your wishes clearly, and discuss their concerns. Discuss them now rather than over your hospital bed. It will be too late when you are in a coma, at which point any relative may insist that you be kept alive, and the doctors will have to keep the machines on. Afraid of being sued, the doctors will err on the side of doing too much rather than too little.
I am afraid that I will die in pain. What can be done?
With modern pain-relieving agents available, no one should have to live or die with pain. Our medical providers have a duty to do all within their power to relieve pain, for the dying have the right to be free of pain. With proper medication and management, pain can be relieved most of the time.
Although pain is a part of the death process, there is an arsenal of pain medicines with which to quell it. But even in hospitals, surrounded by brilliant physicians and dedicated nurses, too many of the dying are still not given enough medicine. The problem is that there are rules. Patients and their families and friends are puzzled and frustrated by nurses who say that no more medicines can be given until such-and-such time.
Nurses care, but they often don’t understand how you are feeling. That’s why constant reassessment of your pain is suggested. A patient’s pain and the efficacy of treatment should be continually monitored. Pain should be assessed:
At regular intervals
With each new report of pain
At suitable intervals after each pharmacological intervention, such as fifteen to thirty minutes after parenteral drug therapy (given in another form other than by mouth) and one hour after oral administration.
Doctors worry about patients becoming addicted to powerful painkilling drugs, as do many patients and their families. But the fear of addiction is largely unjustified. The number of people who actually become addicted is small, some believe as small as one percent.
Do I discuss my illness with my children?
If you will be leaving children behind, you are facing a parent’s worse fear.
Child specialist Kathleen McCue suggests that you do three things. Tell your child that you are seriously ill, name the disease you are struggling with, and tell them what you think will happen. Don’t offer more information than is asked for, and let them ask questions at their own pace. If you feel that you will not get better, explain who will take care of them and how. Remind them that even though you will soon be gone, they will always have memories of you, that they’ll never forget the times you had and the love you shared. Tell them that these times and the love will live forever.
Some parents write letters or make videotapes for their children. Even though they’ve passed on, parents can remain a part of their children’s lives.
We hope that the words we leave our children will continue to comfort them, that they will be symbolic of how we lived and how we died. The teaching we do now will help shape our children’s perception of loss, affecting many generations to come. We spend a great deal of time teaching our children about life. This is a profound opportunity to teach them how we care for loved ones in their last days, to help build their belief system around death and loss rather than leave them with a mystery, and to model for them how we honor the memory of our loved ones.
What about God? Is there a lesson I’m supposed to learn in this?
Some people believe that if they become spiritual enough, they will be able to cure their diseases. That, however would be magic, not spirituality! Spirituality is not a cure for disease. It’s our reconnection with ourselves, with others and with life, eve in the face of death. It is our seeking of peace.
The quest for spirituality is a search for a place of peace and safety. Many people begin looking for this place during the final chapters of their lives. They may do so through religion, on their own, or both. Whatever approach one chooses, it should be honored and supported, even if [others] think it is "incorrect."
Upon developing a genuine desire to explore their spiritual selves, people go through five stages of spiritual reconciliation:
Expression: Many people have trouble accepting the demise of their physical selves because they’re blocked by anger. For healing to take place, we must overcome our taboos and express our feelings…We fear that we will be punished if we express our "ugly feelings, but in fact the opposite is true. We are rewarded for releasing our anger by making ourselves ready for peace.
Responsibility: People have often said that facing a life-challenging illness has improved the quality of their lives. Specifically, it helped them take responsibility for their actions, thoughts, and lives. They know that they’re not to blame for their diseases and that dying does not mean they have somehow failed. They also understand that they have played a role in all that has happened to them in life.
Forgiveness: In the end, our diseases stop spreading, our hearts no longer beat, and our minds cease thinking. So do our fights, grudges, and judgments end. Whether we like it or not, our part of the quarrel will be over, for we will no longer be here. They dying understand this intuitively, which is why they often have a meeting with forgiveness. To forgive does not mean to accept bad behavior. When we forgive, we release ourselves from the binds of hates and hurts…Forgiving ourselves is just as much a part of spiritual growth as forgiving others. Most people are very hard on themselves at the end, remembering all the things they’ve done wrong, whether little or large, and wondering if they can ever be forgiven. I tell them that if they feel they cannot forgive themselves, they should simply ask their God or Higher Power for help.
Acceptance: We don’t have to like what we accept. We think that to accept something is to somehow make it good or desirable. However, I think we can own our feelings and accept what is happening. I believe individuals on their deathbed can honestly say: "I don’t want to die," yet accept that they are dying.
Gratitude: Having expressed one’s feelings, taken responsibility for all that has occurred, forgiven oneself and others, and accepted what is now occurring, the person on a spiritual journey becomes profoundly grateful for his or her life, for both the good times and the bad.
What are the rights of the dying?
The right to be treated as a living human being
The right to maintain a sense of hopefulness, however changing its focus may be
The right to be cared for by those who can maintain a sense of hopefulness, however changing this may be
The right to express feelings and emotions about death in one’s own way
The right to participate in all decisions concerning one’s care
The right to be cared for by compassionate, sensitive, knowledgeable people who will attempt to understand one’s needs
The right to expect continuing medical care, even though the goals may change from "cure" goals to "comfort" goals
The right to have all questions answered honestly and fully
The right to seek spirituality
The right to be free from physical pain
The right to express feelings and emotions about pain in one’s own way
The right of children to participate in death
The right to understand the process of death
The right to die
The right to die in peace and dignity
The right not to die alone
The right to expect that the sanctity of the body will be respected after death
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