The best "Good bye"
....a journey through end of life issues
Death is literally the final frontier for all of us. My view of death is shaped by a tremendous exposure to death and dying from a very young age to the present, spanning fifty years. Some know death well, some do not. Some accept death and know the futility of opposing imminent death. Some find death surreal, mysterious and frightening. The intent of this writing is to offer an alternative view of death. For those about to face the death of a loved one, mine and many other hearts are beating in support of your journey. It is a journey of the living through end of life issues. I am not accepting of death in many circumstances. I have come to appreciate, though, the opportunity that death presents to the living loved ones and even the not so loved living ones. Death is a chance to say farewell, to be of assistance, to heal old wounds and to allow yourself to give the most precious of all gifts; The best "Good bye"
Hospital care and security
For many recent decades, the majority of births and deaths occurred in the hospital. For centuries prior to that, these beginnings and endings took place at home. For the family of the patient dying at home the experience could have been sudden and relatively peaceful or a lengthy heart wrenching nightmare..For many people death became surreal and horrifying, making the hospital an attractive alternative. Also, the post war and post modern increases in hospital usage is a logical trend of an increasingly urban population. The general practitioner who made house calls could not compete with a hospital full of diagnostic equipment. In response to an increase in the hospital' population of patients and visitors, the medical community created norms of behavior for the patient and family to accept. These norms allowed the medical community to represent an alternative authority in the minds of the public."Doctors orders" were followed as if they were orders from a judge. Hospitals had their own rules and their own security force to enforce rules if needed. The security and medical staff often had to be in control to prevent chaos. It was their responsibility to protect the patients and the public. Rules and restrictions put the average person in a position to yield to the expectations of their host..This serves everyone well as long as the patient's needs are met. The needs of visitors and family are also met when they are relevant. So, for example, visitors who smoke must do so outside and visitors who have an issue with the patient or medical staff are encouraged to resolve their feelings without disturbing the patient. The overarching question then is; how far did the hospital go to influence treatment decisions when the quality of life is an issue, then and now?
Progress and preservation
In the 1960's and 1970's, new techniques, new medicines and aggressive Doctors were effective in decreasing deaths from both traumatic and medical causes..Techniques which were normally reserved for the surgery suite were used more often in the emergency room. Trauma became a medical specialty and an additional certification for Emergency Physicians. Some of the technical advances that led to this aggressive form of medicine were procedures learned on the battlefield and in field hospitals of various wars. Often new techniques were brought back by the very practitioners who developed them. Publicity about the advances in medical and trauma care was ever present in media, movies and TV shows. It may have been very difficult for loved ones to decide someone’s fate with the apparent trends leaning heavily toward preservation of life as a standard of care. And if a patient and their loved ones, faced with an illness or injury, finds a caring compassionate and technically excellent team working feverishly to treat life threatening injuries, cure an illness or reverse imminent death, they can be so impressed and appreciative that their feelings and wishes might be marginalised at a critical point of decision. In some cases the preservation of life was an opportunity to give a selfless gift of vital organs for others in need.
At some point the preservation of life became as important as the quality of life. Some thought that cures for terminal diseases were at hand. The news of the occasional patient recovering from a coma lead some families to hesitate in their decision to wean patients off of ventilators and let them have their final rest. This left the family to simply hope for a positive outcome. "Vent homes" became common because hospitals didn't have enough room for long term "vent dependant patients" Thousands of mourning families were unable to allow their grief to advance to the point of acceptance and have closure.
The dawn of hospice in the US
The pre modern history of hospice goes back many centuries. The emergence of hospice care in the western hemisphere came slowly. Modern hospice care was only recently introduced in the UK and the USA in the 1960's and 1970's. Hospice care had some opponents. Some people thought it was wrong to "give up" on a patient. Acceptance of hospice might have taken a very long time. However, the preservation model was coming into question by both the population and the medical community. The terminal patient was being seen as one who suffers needlessly in the hospital and away from the comforting pleasures of their home. Families were becoming more involved in end of life issues. Living wills and "Do not resuscitate" orders became more common and more standardized for legal purposes. The five phases of death and dying were being taught in social studies classes. Care givers were getting " Critical Incident Stress Debriefing " after emotionally distressing occurrences of death. We returned to accepting death as a natural process whether at home, in the hospital or with the care giving principles of hospice. As hospice became more accepted, more patients were treated without exceeding their needs.
The first modern hospice in the west was founded in the 1960's. Dame Cicely Saunders and Dr. Elizabeth Kubler Ross are two names associated with the founding years of the modern hospice at St Christopher’s hospice in London where Dr Saunders taught with the philosophy; "We do not have to cure to heal"
Death out of the darkness
Later, Saunders taught at the Yale school of Nursing in Connecticut. There she stressed the use of a holistic approach to the terminal patient as well as beneficial pain management. Dr Ross wrote and published; "On Death and Dying" The book, according to a Time Magazine review; "Brought death out of the darkness". It was within this book that Ross identified the five phases of death and dying that effect the patient, the family and Care givers. The five phases are: Denial, Anger, Depression, Bargaining and Acceptance.The first hospice in the US opened in Connecticut in 1974.
"Theoretically, acceptance is the goal of the journey through the process of grieving someone's death. Grieving without acceptance leaves the survivors in a state of potential depression or endless speculation about what could have been done and possibly even self doubt or blame. Acceptance will not reduce or shorten a period of grief but it does free the survivor from so many other issues." Harry Watson.
Tara Parker Pope; Lessons from Hospice Care Nov. 30 2009 The hospice care I observed left me wondering why all medicine is not like this- focused on the whole person not just a disease. In most of the articles about hospice the most controversial topic is pain control. Some make observations like the following;" My fathers life was cut short(er) by the "comfort" provided for him-there was nothing natural about the speed of his downfall. I felt robbed." said a respondent to the article by Pope.
Two contrasting death events
In 1964, Emelie, aged 48, had suffered severe headaches. A general practitioner prescribed pain medicine. After years of enduring pain without diagnosis or relief, Emelie saw another Doctor who was immediately alarmed by his findings. Emelie was admitted to the hospital immediately after the office visit. Her diagnosis was lung cancer that had metastisized to her brain. Presumably, part of the diagnosis was made by examining the blood vessels and optic disk in each eye, which the first physician may not have done. Emelie never returned to her home. For about three months she lay in the hospital. Three of her four children were allowed to visit her. However, visitors under the age of fourteen could not go beyond the first floor. Her youngest son, age ten, was unable to see her until her funeral. Over a year prior to her death her son had asked her daily to stop smoking. His awareness of the dangers of smoking came from publicity about the surgeon general's warning on the cigarette pack.
In 1993 Gerald , age 80, had been diagnosed with pancreatic and liver cancer. His youngest son had helped him realize the gravity of his diagnosis. Prior to that Gerald had told his son every day that he was going to beat his cancer. When Gerald realized how little time he had left, he focused on looking up old friends. Because of his age , many of his friends had passed on. He gave his son a list of addresses and cemeteries to visit. The report back to Gerald was not as productive as he would have liked but going over the past showed that he was reconciling old issues and relationships. Gerald was bravely working his way through the five phases. Within hours of the end of Gerald’ life, his son and daughter were able to hold his hand and tell him that he had done a great job as a Dad. When his eyes closed and he was still breathing, they continued to tell him that he had earned his rest and that he could be proud of his life. It was alright to let go and not be afraid. He had prepared his children to go on from there. Although he was in the hospital, times had changed.
The preservation model was in the past. There was no expectation of heroic rescucitation. There was no need for technology or broken ribs. And this was, for the son, a life lesson about death.
It's not a place it's a concept
Recently, I interviewed a Nurse who has worked in hospice care for about 8 years. She was insistent about remaining anonymous. Nothing that would reveal her name or location was allowed. Below is summary of my questions and her comments She felt that specific treatments such as pain management were too controversial.
First I wanted to know what she saw as the primary objective of Hospice care. Then, what was the first step in starting to accomplish those objectives. Next I asked if things always went according to plan and if she was always able to accomplish what she felt was needed. After her answers I asked how she thought that families and patients should interact. Finally I asked if families sometimes asked for or expected conventional treatments from hospice care. Her responses were as follows.
The first and most important job of the Hospice Nurse is to think speak and act as an example for the patient and family to emulate. Many patients and families may logically realize that the anticipated death is what brought us all together, but not know precisely how to behave in preparation for that death. We conduct a thorough briefing for the patient and the family. The purpose of that briefing is to let them know what to expect. Each situation is unique. You may meet the family first or the patient first but you must quickly assess their expectations Did the briefing make a difference? Then immediately I need to start guiding them toward the most realistic and practical way to let go of their own needs and have them concentrate on the patient' needs. There are times that old issues or self centered expectations either delay or derail the process. And there are times when the process carries on beautifully The patient, ideally, has resolved all issues and knows that the family is there to help them in any way possible. The family knows that this is not so much a loss as an end to suffering. Grieving comes after the passing and should not be displayed for the patient. Their most important function is to support the patient and the other family members. Near the end, people sometimes ask for the kinds of treatments that would be expected in a hospital critical care area like ER or ICU. Then we need to contrast and demonstrate the differences. We meet the patients needs in the context of hospice without intervening to delay death. The family can sometimes accept this more easily as they observe us accepting the outcomes of hospice care."
It's not a place -it's a concept of care that can be provided anywhere. Along with tending to the patient, hospice teams also provide compassion and support to grieving loved ones during the illness and beyond. AARP; Facts about Hospice Care.
"Quality of life is the most important outcome of care at the end of life"
The references in this research are few because much of this writing is from my own experience. Emelie and Gerald were my parents. I can verify that the two experiences have had a much different impact. In addition I worked in a level one trauma center for six years. I watched the trends. I saw the families with "Hollywood" expectations for their loved one's outcome. I assisted with the patients who were aggressively resuscitated. I transported patients to vent homes. And I watched vent homes fall out of favor. I saw them close as insurance coverage for that sort of patient was eventually denied. The period of heroic medicine produced many opportunities for Doctors, nurses and ancillary staff to sharpen their skills, which was undoubtedly beneficial to many other patients. There were courses created, that still exist, which serve to certify Nurses and Paramedics in advanced trauma and cardiac care. This period also promoted the prevalence of helicopter transport for patients needing a higher level of care. The benefit of helicopter transport is another product of military / battlefield medicine.Overall; medicine, hospital patients, students of medicine, hospice patients and public safety have all benifited by developing these two contrasting levels of treatment.
Here's a link to an article by Rex Winsbury that should be helpful.http://www.hospicenet.org/html/what_you_need.html
Quality of life is the most important outcome of care at the end of life. (Stewart, Teno, Patrick & Lynn 1999)