Frequently Asked Questions on Death & Dying
This information should not be used to diagnose a condition or to serve as a treatment plan for the dying. This condensed information is from the book, The Needs of the Dying, It is not a substitution for reading the book. The information here is presented as a very abridged resource to familiarize the reader with some of the common physical and emotional aspects of dying. For medical advice and individual problems, you should consult your physician.
Every life is complete. The only two requirements for a life to be complete are birth and death. People may say that life isn’t complete without a family or a career, or a certain number of years, but whether we like it or not, birth and death define a life… There may be things we wish had happened -more time, more opportunities, and more experiences. But their absence doesn’t mean that a life was incomplete. While this may be true it is not often comforting. The emotional reality for us, is while a life may be complete, it will always feel too soon.
What we see when we look at her is disease and impending death and so often we refer to her as “my dying mother” when we ought to say “my mother, who is dying.” Thinking of her as “my dying mother” limits her, in her mind and ours. She is and always will be a compete human being who happens to be dying.
We tend to forget that the dying still have stories to tell. Just as the healthy tell bits and pieces of their stories every day, people facing life-challenging illnesses want to tell us who they are, what they did for a living, about their families, their hopes, their dreams, their regrets.
Listening to the stories of the dying brings out their dignity and humanity. They have beautiful images of themselves, filled with stories to tell. We must continue looking and listening, until the end, for their sake and for ours.
Seeing beyond the illness is one of the most meaningful gifts we can give them. It is a greater gift to ourselves.
Hope and fear grip everyone who struggles with a life-challenging illness. The two emotions are as inevitable as they are constant, right up to the moment of death. If we take away someone’s hope, we leave them with nothing but fear.
As long as we’re alive, until the last moment, we can have hope.
Unfortunately, we often diminish that hope by negating, by judging, or by denying. We rob the dying of their right to hope when we insist that they “face reality,” or when we plead with them to “stop looking for miracles.”
Hope is a journey not a destination; its value lies in the exploration. Hope is the way we live, and the journey of hope should last until we end.
This is very hard for loved ones and the medical community to understand. Our thinking is limited; we only see hope in a cure and we feel hopeless when we believe there is none. The dying, however, see the value of living hopefully rather than hopelessly, and that is why they choose hope as their companion on the final journey. Many find hope in support groups, where a shared hopefulness improves the quality of life. Others find hope in faith and spirituality.
Hope and reality needn’t clash. You don’t have to tell lies in order to keep hope alive. I’ve sat with hundreds of people who were in their last days, hours, or minutes, and I never once said, “There is no hope.” Instead, I say, “It looks like you’re gong to die but there’s still the possibility of something happening. It’s okay to hope.”
Hope should always be cultivated and never challenged. We can live for weeks without food, days without water, but we can only live hours without hope. As long as it is nourished, hope is like a strong vine that can grow over and around obstacles. There are so many obstacles standing in the way of our loved ones’ having hope that we needn’t add more by being “realistic” or by playing “devil’s advocate.” Allow those who are challenged to find the paths that are best for them. Help them use their hope well.
Some otherwise good doctors destroy their patients’ hope by telling them not to seek alternative treatments. Other doctors, unable to study and adopt every new idea that comes along, still remain open to new possibilities. When the AIDS epidemic began back in the early 1980s, many of the cancer and infectious disease specialists admitted that they had no answers and were willing to let their patients explore alternatives. If asked about other treatments, they said: “I don’t know about the alternative therapies you’re asking me about, and I cannot endorse them. But please let me know if you try them and I’ll monitor your progress and your lab results. We can learn together.” This approach helped to keep hope alive and helped many people to improve the quality of their lives.
The right doctor is the one that meets the patients’ needs. Some doctors have better bedside manners, others have more technical expertise. It is for the patient to decide which qualities they want in their doctor. Just remember a doctor works for the patient. If he is not the right fit, do everything you can to try to find the best doctor for you and your situation.
Being treated with dignity means being included in conversations about one’ s death and the decision-making process. We often try to protect the dying by excluding them from these conversations. We go out of the room to discuss what we’re going to do with Mom, for example, feeling as if we’re somehow protecting her by not allowing her to know about and participate in the discussions about her care. But we’re not protecting her. What ever happens as a result of that conversation, happens to her. We actually harm Mom by denying her need to make her own decisions, by acting as if she were too fragile or incompetent to participate in her own life. We strip her of her dignity and her rights as a human being by leaving her out of this process.
Despite their illnesses, despite the fact that they are dying, they are still whole people. Treating them as such preserves their dignity and their hope. Human beings deserve tenderness, dignity, honesty, and compassion. And most of all, they deserve an acknowledgment that life ends at death and not a moment before.
We have a primal need to express feelings. As death approaches, the need to share and to speak from the heart grow. We rob both ourselves and those around us when we erect barriers to intimacy. It is not only the job of those who will live to comfort those who will not. Just as we comforted each other in life we should continue doing the same as death approaches. Even though we don’t know how to say good-bye and we don’t want to say good-bye, if we can break through our reluctance and find the courage to express our emotions, we can bring our relationships to new levels. We can complete them. Sharing emotions while grieving together is not surrendering to death. Grieving in each other’s arms can raise us to new heights of intimacy and love.
“What’s happening here?” Many of them calmly reply: “I’m dying.” Others are sarcastic or angry or frightened, upset that I seem to have missed the obvious. But in every case, the topic of death is opened. When I say, “Your family and friends think that you can’t talk about dying,” they usually reply, “No, they can’t talk about it.” And then we have discussions about disease and dying that later amaze their families. They wonder how their loved ones can talk about death with a total stranger, but not with them.
You never know what someone needs when going into a conversation. The person you are talking to may not know either for dying is always a new experience. The emotions of the person who is dying may change from day to day or moment to moment.
It’s all right to talk about dying if the person is receptive. Each situation has to be gauged individually. Not talking about death won’t make it go away, but talking about it can bring life back into your relationship. Talking about death is like stepping into uncharted territory. It can be liberating and cathartic.
There are no rules, except to play it by ear and listen to what the dying have to say.
Listen to them complain. Listen to them cry. Listen to them laugh. Listen to them reminisce. Listen to them talk about the weather or talk about death. Just listen.
People who are facing life-challenging illnesses will tell you everything you need to know; how they feel about their situation and—if they’re comfortable talking about it-how they would like to die.
As we listen to those facing death, we hope that they will share with us their beliefs and thoughts, perhaps comforting us. But sometimes what they tell us doesn’t comfort us. Sometimes we don’t agree with what they tell us; sometimes we are disturbed to learn that their ideas on death challenge our own. Remember that the dying have the need to believe what they want and to express their feelings about impending death in their own way, even if their feelings are heartbreaking or devastating for us to hear. It is their right to live and die as they choose.
We can cry with our loved ones, we can analyze treatment strategies we can disagree, and we can deny the situation entirely, but in the end, the best thing we can do is to listen.
And when they tell us that the end is near, we need to listen even more carefully.
It is widely believed that hearing is one of the last senses to go, which is why medical professionals are taught to behave as if patients can hear right up to the end. When people ask me if their loved ones can still hear them, I always answer yes. If not with their ears, then they can hear you with their heart. They may not be alert, but if you say something from your heart, they will hear it in theirs.
You can still say what you wish you had said, even if your loved one is in a coma. Say it out loud if you can; if circumstances do not permit speaking out loud, say it in your mind. Much of our communication is nonverbal anyway. Much can be said with a smile or a touch. Sometimes you may do a lot of talking, other times you may not. Don’t be afraid of the silence. Holding hands or even just sitting nearby can communicate all that needs to be said.
At every stage of life, we find peace and fulfillment in our relationships that are current. A current relationship is one in which both have said everything they need to say to each other, whether it is supportive or challenging. Our relationships are current when we no longer harbor unexpressed feelings.
When there is a blockage in the relationship, however, when things have been left unsaid, we are bound to be uncomfortable and unhappy. That blockage and discomfort are most pronounced when things have been held back for years and someone is gravely ill. Ironically, most of us are less likely to make a relationship current when a person is ailing, for fear of doing harm. But if those unspoken thoughts are not expressed, they may never be. The urgency of illness is a golden opportunity to push through ancient blockages and talk openly and honestly.
Don’t feel guilty because you are continuing to live. You are not responsible for what has happened. Accept that some things are out of your hands.
Let the dying know that it’s okay to leave-that you will be all right without them. You’ll miss them for the rest of your life, but you would not want them to stay if it continues their suffering.
Don’t feel guilty if you find yourself preparing for your loved one’s death. But it does help prepare you for the inevitable and is nature’s defense against deep pain.
Say what you want to say now, while there’s still time. You may still have something to say or something to do for your loved one. “Do it fearlessly,” one patient told me. Let your loved one die with an open heart-yours.
To the best of your ability, try to accept what is happening and the way it is happening. As difficult as it may be to understand and accept, dying is a part of life.
Take care of yourself and let others support you. Seek help from a therapist, a support group, your religion, or whatever else comforts and strengthens you. Try to stick to some kind of regular routine, especially during this very stressful and upsetting period. Believe it or not, it will help normalize your life and make you feel better.
Above all, be gentle with yourself. It really will get better with time, although you may not believe it right now. Time heals all wounds, and although your loved one will no longer be physically present, you will always retain the love you have shared with that person. Those whom we’ve loved and who have loved you in return will always live on in our hearts and our minds.
For the Dying
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. We all have the need to make decisions concerning the way we die.
Whether or not you’ve decided to participate in your care, and whether or not you’ve learned all you can, we have the need 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.
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.
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.
Doctors and Nurses care, but they often don’t understand how you are feeling. You and your family must be pain relief advocates. 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 pain killing 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. There is a time to worry about addiction and a time to worry about being out of pain. We must not confuse the two. At the end of life pain relieve is the priority.
Child specialists suggest 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.
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.”
It is important to remember that we are responsible for our health, but we are not to blame for our illnesses.