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Compassionate End-of-Life Care (ELC)
How to Approach and Prevent Suffering
Ernest H. Rosenbaum, MD
You can't predict an accurate future.
When your time in life becomes limited, life becomes more precious.
We all know we are not immortal. This awareness of our finite time on earth can enhance our appreciation of our daily lives when we are healthy. When faced with a serious illness, however, that same awareness can devastate us when we most need peace of mind and freedom to focus on getting well. One way to achieve this freedom is to make known our desires about the event none of us want to contemplate - total incapacity and death. There are two good reasons for doing this: first, to ensure that your wishes are respected and, second, to avoid burdening your family and friends with the need to make painful decisions.
During the dying process there is an extraordinary opportunity for all involved to respect personal integrity and restore death to its sacred place. There are now more choices with the advent of hospice and home care offering flexible services which are more meaningful and personal addressing the values and meaning of life. Often spiritual dimensions provide moral strength which can improve the care of a dying patient.
End-of-life care has changed dramatically over the last hundred years. A century ago, little could be done except to try to afford some level of comfort, which was largely unsatisfactory and unsuccessfully palliative. Over the last five, ten, and twenty years, there have been remarkable technological advances in the care and treatment of medical problems, with newer treatments for cancer and other life-threatening diseases made possible by up-to-now unimaginable advances in the clinical sciences and in patient care. Where forty years ago palliative care was only a word, it's now a major industry with the hospice movement, hospice beds, and hospice-type care, which have totally changed the venues and programs required to provide high-grade palliative care.
Yet, despite all these achievements, millions of people in America and all over the world seek palliative care that is compassionate, holistic and sensitive to the whole person's needs, and yet it is not being delivered. This, in part, is inexcusable with all of our knowledge, but because of limited resources and money, we are constrained to deliver the best care we can, which, to a large degree, is inadequate for the major part of the population, suffering with a diagnosis of cancer or another life-threatening disease. Palliative care is better accomplished in major clinical centers, but yet, there are great deficits in providing programs. With upcoming solutions and improved care and treatments, more people will be alive longer and healthier while trying to get the most out of the last few weeks, months, and years of life.
It is felt that the deepest and most profound impact occurs when there is a life-threatening illness. With recent discoveries, this challenge is being met so that physical symptoms are addressed with compassionate medical care, as well as the patient's mind-body issues.
Total patient care takes awareness, understanding, healing and thoughtful consideration of the needs of the patient, family, and friends to help put together a total patient care program. This is supported by numerous organizations and medical studies done over the last forty years, which have proven these concepts to be relevant and reasonable.
We are dedicated to promoting better palliative care through awareness, information, better healing processes, and a strong movement for mind-and-body care. Fortunately, many foundations are becoming more aware of the problem and are giving their aid, but it is still inadequate. Thus, it is important for each person, family, and friends to become knowledgeable and interactive with patient, family and medical team to help promote better and more compassionate care. It is our hope, as well as that of others, that by promoting better ELC, we can ease suffering and provide better comfort for those entering into this last phase of life.
When a diagnosis of a life-threatening illness is made, there is often a wake-up call, when patients become acutely alert to life, and possibly death and also share their thoughts and feelings to help promote communication with loved ones and promote better understanding of the illness and problems needing to be solved.
Group support, as well as individual one-to-one psychological support, has become very important in promoting understanding of the illness process, as well as providing compassionate care. A diagnosis of cancer or a life-threatening illness is usually unexpected, and it comes like a bolt of lightning, which, in just a few seconds, changes the lives of patient, family and friends. Most everyone wants to help, and the person with a life-threatening illness faces new challenges that need immediate solutions. Unfortunately, medicine often moves at a slow pace, and it may takes days, weeks, and occasionally even months to arrive at the appropriate diagnosis and a plan for what needs to be done. Speed really helps, as there is tremendous anxiety every minute and hour. The patient, family, and friends are continually worried about what can and should be done and object vehemently to the obstructions set in their pathways by the regulations of governmental and state insurance and doctors' rules, as well as the problems that exist just getting through an inefficient system that seems endless.
Emotional healing is one of the essential ingredients needing attention in the healing process. The body and the psyche are major concerns, with each person dealing with the situation in his own way. We strive to live each day to the best of our ability through the love of our family and friends and to try to forgive those who have offended or taken advantage of us. This helps to dispel some of the anger and unhappiness that occur toward the end of life, when one wishes to be free of the encumbrances that often plague us, causing depression, sadness, despair, and resentment.
Many people are unable to forgive and live with negative emotions, anger, and rage, which often disturb the psyche and do not allow the freedom that one obtains through benevolence and forgiveness, which may help lessen pain and depression.
Through awareness and compassion, one is able to obtain some semblance of the healing process psychologically, as well as the physical benefits of relief through the forgiving process. Shakespeare said, "There is nothing good or bad but thinking makes it so." We know from experience that the inner thoughts that run through our minds, shape and color the decisions that direct every aspect of our everyday lives. The connection between our thoughts and our biological processes is unclear.
Advances and medical progress can have a very powerful positive or negative effect on health and well-being. We hope to give our patients a direct experience, showing how conscious and unconscious thoughts affect every aspect of the experience of life, including physical well-being. The mind provides meaning virtually to everything it focuses on, and each patient gives his own interpretation to the illness, which can dramatically affect the ability to assess, choose, and interpret treatment opinions, side effects, and response or lack of response to care. We may make many inaccurate assumptions about cancer and life-threatening illnesses through misinformation that can affect and burden the unconscious mind. People who believe that challenges will make them stronger and better may react quite differently in treatment from a patient who is secretly convinced he is being punished for something in the past. This concept of guilt and self-punishment is devastating and can really affect the mind and body and cause depression, evil thoughts, provide some rationale for insomnia, and can affect a person's physical and mental health.
Each person attaches some need to the significant medical problem, and this can lead to sadness, unhappiness, and inability to cope and recognize that these patterns that can totally affect how one functions and lives. Deeply held convictions are brief stops that cause detours in one's pathway due to poor information and philosophy. Following one's particular religious or philosophical approach may be very helpful in keeping one's orientation along a more straightened pathway to help one live a more productive and meaningful life. The goal is to help discover what conscious choices can be made and what possibilities can occur to help gain solace and comfort in life.
Making a Choice in Life Assessment Between What is Known as the Living and Dying Process
Each person wants to live as long as possible and with as much comfort and enjoyment as feasible. This becomes more significant when a person is gravely ill or enters into an end-of-life process. Early in life, each person in the teens, middle life, the 40s and 50s, and in old age still sets goals to live by and hopes to attain. Goals give a meaning for living and are points in life that one hopes to achieve.
Many people try to define their goals, and one of the best principles is that of Ben Franklin, who would take a blank piece of paper and draw a line down the middle. On the right side he put the positives and the negatives on the left. He then started making a list of the positive things he would like to achieve or enjoy in life. On the negative side he wrote things that were hindrances or roadblocks that were negative, depressive, or unobtainable. This list was just a beginning that was continued and reviewed frequently with items added on or deleted. This yields a pathway of what is important in life and becomes goals and objectives to live by. Using this goal-oriented type of philosophy, create family histories and review them with parents, grandparents, spouses and children.
People often feel satisfied and at peace with their situation toward the end of life and make decisions on how they wish to have the end of life accomplished. One does not want to encumber some members of the family, may think they know what you want, but have not communicated with you or have miscommunicated with you and things are not accomplished.
Writing down your basic philosophy, thoughts and wishes about end of life can be very helpful and a blessing, which is called The Legacy of Love. This is your legacy to those you love to Help Spare them from having to make decisions about you, which may or may not be appropriate and are not always in sync with your wishes.
There are things you can and should do in the completion of your life include Advance Directives special codicils on how you wish to exit life, and the type of comfort care you require. For myself, I used the phrase terminal sedation, which means don't hold back Morphine, Demerol or narcotics if I'm in pain to see if the pain will go away. If, for example, I do have pain, I want it treated now, not next week or next month, or in five minutes, because if I'm having pain, treat it! That is my request, and if that is not accomplished, it means that someone is absolutely negligent and should be shot!
It is often nice to make a life assessment of what you have done to help your children appreciate what you think. When one tallies accomplishments from high school, college, in marriage, or with children, it is often amazing to see what stands out as significant with special meaning, and it's important to recognize these feelings. Being diagnosed with a life-threatening disease is often a catalyst to promote such deep and fearful thoughts because of the potential loss of control that occurs somewhere along the pathway toward the end. It is important to identify what you think is important in life and what the significant aspects of your existence are, which can give great satisfaction, at least for most people, that life has had value and was worthwhile. Our spirit lives on, and a lot depends on your religious and ethical philosophy of life. I admire Catholics for their philosophy that if they have lived a good life, are given absolution, have gone through Confession, and received the Sacraments of the Ill, know they are going to Heaven and will meet their family, and other members who follow can join with them. Most religions, including the Jewish and Buddhist faiths, do not have this guarantee, and that assurance at least gives the Catholics a lot of confidence if they are true believers. I can remember vividly helping sedate a Catholic lady in severe pain, and her family, although they did not want her to be in pain, wanted to be with her consciously at the end of life. I received an admonition for not allowing this, although I felt my obligation was comfort care and relief of suffering, but that was not what the family had requested. You have to listen to both patient and family to know what their needs and wishes are, remembering that the patient's wishes come first.
One's spiritual life, thus, can be very important in not only living a full life but also ending a satisfactory life. The incredible mystery of what life really means to a person is vital and may reflect the ultimate love and freedom that can be part of the healing as well as the dying process. It also may set an example for future generations in how best to live and maintain optimal quality of life.
I would like to give credit to the Geffen Cancer Center and Resource Institute for some of the philosophic thoughts engendered in this summation of my thoughts and some of their philosophy.
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