All Kinds of Love
Throughout the course of our lives we will experience the deterioration of a loved one due to illness or aging. This may cause us to make a choice of how and where we choose our loved one to die. Authors, Carolyn Jaffe and Carol H. Ehrlich, in their book All Kinds of Love, illustrate how the relationships between doctors, patients’, family, friends, hospice volunteers, and hospice nurses all play an important role during he patients last days as they try to reach a “good death”.
In the book’s foreword, Rabbi Earl A. Grollman comments on Jaffe’s history of nursing experience and states “Her stories bring alive the concerns, the surprises, the victories, the disappointments, the mistakes, the uncertainties, the joys, and the pain that are part of one’s dying” (1, p. v). The preface focuses on the type of care Hospice provides for the patient and family, while the section entitled “Hospice is…” provides a detailed definition of hospice.
Chapter One demonstrates the sensitivity a hospice nurse must use when dealing with new patients and how the nurse must remain unbiased at all times. Chapter Two reviews the family emotional strains and stresses which can be experienced when a loved one is dying within the home and how different people deal with the change. In Chapter Three we can develop a deeper understanding of an individual’s strength and acceptance through the story of Karen, a seven year old who is dying from cancer. The different coping mechanisms expressed by Karen’s parents are very contrast dramatically as the needs of survivors vary.
Chapter Four highlights patients’ need for control and decision making over his or her own life. In Chapter Five, Henrietta, the patient had very little control over her treatment and pain because her husband refused to accept her dying, until Janice (hospice nurse) promised her dignity during death. In Chapter Six, William tries a new method of pain control and his spirits are lifted as he once again has some control in his life as expressed in his statement, “I can’t believe the power I have”(1, p.194).
Chapter Seven lightly touches upon the death of AIDS patients, and the stigmatism’s and rejection they may face, but also exhibits the patients’ ability to control their moment of death.
The joy which a family can gain when there is an open acceptance of a loved ones death is visible in Chapter Eight as John’s family makes the most of their time together before he dies. In Chapter Nine, the gifts gained by one nurse’s accounts over her career are presented in a touching remembrance. In Appendix A, hospice’s evolution towards better care is expressed along with Jaffe and Ehrlich’s personal views on how Hospice can be improved. Appendix B provides home remedies for many common symptoms of illnesses which can be used in practical situations. A listing of compassion groups and other support contacts are in Appendix C.
Throughout the book, we learn that religion, values, needs and personal experiences all contribute to the type of care an individual receives. A flexible and unbiased attitude is needed in order for the caregivers methods to be effective.
Jaffe and Ehrlich’s purpose in writing this book is to provide people with a holistic understanding of hospice care by highlighting the many factors of hospice care, such as: pain control, nursing support, Medicare, availability of hospice programs, curriculum of medical students, sensitivity to religious beliefs, as well as the details of each area. Through their stories, they provide examples of the above areas to help the reader understand the benefits of Hospice care.
This paper will provide an outline of the main points in the preface, introduction, and each of the nine chapters and appendix A; excluding the foreword, Appendix B, and Appendix C.
Byock explains “the power to change public and professional attitudes lies within the stories of people’s experiences in dying” (1, p. viii). This solidifies the purpose of this book as the reader tries to understand the experiences within. Byock also hopes to change society’s views, one person at a time. He explains: “The stories in All Kinds of Love highlight what is possible: Care that delivers on a commitment to provide comfort. Care that allows the person control over his decisions and life. Care that is genuine, loving, and unabashed. Care that is creative” (1, p. x). Although this book contains only nine encounters, it opens doors and views on dying patients’ control over his or her remaining days as they attempt to make the most of them.
This small extract from the book defines Hospice care as: a service and attitude towards dying, patient oriented care, an opportunity to strengthen relationships, control of symptoms not a cure, a Hospice representative acting as a liaison, and most of all a holistic team approach of care (1, p. xvii)
Jaffe and Ehrlich express the importance of treating everyone as a unique individual. “Even though human beings have the same basic needs and feeling, we are all very different” (1, p. 5). “There’s a staggering variety of backgrounds out there, I can’t make judgments about what people are like, or what they mean by the way they act – not unless they grew up in my own family” (1, p. 5).
Chapter One illustrates the closeness the patient and family can share before the death of the patient, as seen through the story of Aggie and Ray. It also provides a glance at factors such as, ignorance, denial and social class, which all affect the type of care given to the patient. Aggie’s denial of her illness is apparent when she refuses to try and stop her cancer: “Yeah, and no one’s gonna take my leg off” (1, p. 12). Aggie and Ray’s worries about paying for her health care may signify a common anxiety for lower class individuals.
Most importantly, the hospice caregivers were able to please Aggie most of the time and also able to relieve some of Ray’s stress by entertaining his sister and helping out with the household chores. The caregivers also helped him deal with his loss after Aggie passed away. “Quality of life for the caregiver is enhanced by hospice support of his or her physical, emotional, social and financial needs and is directly affected by the caregivers perception of the patient’s quality of life” (1, p. 26).
Chapter One lists recommended attitudes and behaviours of nurses caring for the dying, caregivers’ perceptions of nursing behaviours in a home care setting, and criteria for satisfactory performance.
Minnie’s inability to beat her breast cancer leaves her at a standstill, until her daughter, Jane, and her family invite her to live with them. This story presents the tensions and stresses as well as the closeness and joy which can be experienced by having a loved one die in your home, as opposed to a hospital.
Amy’s overcame her initial difficulty dealing with Minnie dying in her home by finding her own way to share something special with her grandmother: making paper flowers to decorate her room. “With the death, Jane and Howard and the girls knew the meaning of family in the fullest sense; they were left with loss, but also with the joy of love given and received” (1, p.57). These first hand experiences with Minnie, help ease the grieving process for the survivors (her family) as they have had time to share things and care for their loved one, until death.
Heather’s degenerative condition led to her need for in-home care. “Heather was once more connected to a tube, but this time it was in her own home” (1, p. 68). Karen and Eric (Heather’s parents) had differing opinions about in-home care as well as different ways of dealing with their grief. Eric seemed to contain his grief internally as opposed to Karen who chose to grieve outwardly.
Heather’s ability to predict the events of her life were eerie for a seven year old. She spoke to her mother “I’m going to die before you Mommy, but only God knows when”
(1, p. 75). Her strength and acceptance of her death was admirable to say the least.
Even after Heather’s death, Eric remained isolated, whereas Karen found her meetings with other parents who had lost children very healing. This story showed the importance of recognizing not only the patient but also the survivors as individuals, because not everyone is going to deal with their loss in the same manner.
Jaffe and Ehrlich define acute grief by “physical characteristics, such as shortness of breath, fatigue… nervousness, irritability, and oversensitivity to noise” (1, p. 96). As well as psychological reactions such as “numbness, guilt… depression or ambivalence” (1, pg. 96). These symptoms may only be temporary until the grief moves on to another stage. By understanding the grieving process, it may help survivors to cope better. Lindeman and Freud discuss various coping mechanisms to help survivors in the notes for Chapter Three.
Joseph and Anne’s struggle with his deteriorating condition and the uncomfortable tensions between them acted as a barrier at the beginning of his in-home care. In a moment of pain, he acquired pills to assist him in his own suicide if he chose to do so. He never used the pills, but died naturally. All he really wanted was to be in control once more and be the master of his own destiny.
In the notes for Chapter Four a deep discussion about the acceptance of euthanasia as an acceptable method of death are discussed. Many questions are raised such as: has the person made a sane decision? Should their family be involved? What method should be used? Although hospice has not taken a stand on euthanasia, Jaffe and Ehrlich state “In the meanwhile as an abiding principle, hospice will respect the patient, even if his considered choice is suicide” (1, p. 149).
Many times a hospice nurse is more than just a nurse “My role in the family is to help each person understand what is really going on, because ignorance or misunderstanding may be the cause of conflict” (1, p. 155). In the situation of the patient Henrietta, it was her husband Jim’s in…..ability to “let go” and let Henrietta live out her last days peacefully that caused her even more pain during her hyperthermia treatments.
The hospice nurse, Janice, made a decision to speak with Henrietta’s doctor about pain medicine behind Jim’s back. She felt this was necessary, but it also was a very difficult decision to make. Often the family of the dying patient suffers denial, just like a patient may. Janice’s promise to Henrietta to allow her to have a dignified death by removing the bandages across her chest before the response team arrived at the time of her death, was not met, but the discussion helped Henrietta all the same. “The authors submit that being included – both in information sharing and in decision making – is the crucial factor in an ill and dying patient’s feelings of dignity” (1, p. 174). Up until Janice made her promise to Henrietta, Jim had made all the decisions for Henrietta without really considering her desires.
William’s initial rejection to hypnosis to control his pain withered as his pain grew stronger. After learning the hypnosis technique he found great confidence and happiness as he could now control some of his pain and also share his imagery with his wife. “”I treasure these days, my love” William whispered to Eva in the king bed one night. “We don’t have many left, and being able to keep the pain away is such a gift. You must remember…”” (1, p. 194). His new feelings of control helped him deal with his death. “Wasted and dying, William seemed more a man then he had been for may weeks” (1, p. 194).
Chapter Six notes discuss the alleviation of pain by administering drugs and when the limit should be drawn. In William’s case his pain control was very humane, but in such cases were hypnosis is not effective, pain control can be a difficult decision when you have to consider age, level of pain, and addiction issues.
“…some people are bound by ties to the people who love them… In order to die they need some distance, some space in which they do their dying. They can’t leave while people they love hover” (1, p. 215). Sandy waited to die until he had reconciled with his mother, as he knew both his parents didn’t accept his homosexuality, but he also waited until no one was at his bedside to die. Sandy’s spiritual needs, as defined by Morgan (1, p. 235) were met through his lover, mother, and grandmother and he was just waiting for his moment alone.
This family’s ability to accept John’s dying condition enabled them to make the best of his last six months of life. The intimate moments and conversations this openness allowed them to share, will bring them happiness after his death. Rose, John’s wife, wrote in her diary “We can still share some lovely moments – like a glorious sunset last night. Dad called it a preview, and smiled.” (1, p. 267).
In Joan’s situation, her final opportunity to release some of her pain was during her eulogy for her father. The notes in Chapter Eight discuss views of death and misconceptions of a patients need to talk about dying. “Too often the people around him believe speaking openly would rob him of hope, not realizing his hope can and must lie in something other than an expectation of cure” (1, p. 276). This statement applies directly to Joan’s inability to deal with her father’s dying, when he was alive.
The nurse’s role models in this story helped make her the person she was which enabled her to go on to start her own Hospice center. While keeping an unbiased attitude and watching what she said, she experienced many different cultures, religions and people. As she reflects upon her life and the people she has touched, it is quite apparent how rewarding she has found her job and life.
In my opinion, I believe Jaffe and Ehrlich took a very organized approach to this subject in their book. I felt the Hospice is… section was particularly well done. A broad definition is usually helpful at the beginning of a book like this. The fact that hospice was again defined in more detail throughout the book was helpful. The authors addressed the purpose of Hospice care simply, when they wrote “Hospice is comfort care, not care for cure” (1, p. 21). It’s plain to the reader that the hospice caregivers are there only to ease the pain of the dying patient and not to give them false hope of recovering.
Minnie’s story in Chapter Two had the most impact on me personally. I’ve always believed that aging/dying family members should be taken care of in outside institutions as to not burden the living. After reading her story my outlook has changed and I truly understand how valuable the remaining time can be with that dying individual. I also feel that this time together before the death helps the grieving process after the patient has passed away because the family is more emotionally prepared for their loss.
In Chapter Three, the authors wrote “The deeper the love, the greater the suffering when the object of that love is lost” (1, p. 95). This statement is true, but certainly not fair to the individuals grieving. After losing my friend Adam this Christmas in a car accident, I relate specifically to this statement. During his wake, I cried not only for my own loss, but also deeply for his mother and girlfriend who will never fully stop grieving for him. Fortunately, they have realized how valuable his time was with them and they can find comfort in knowing how much he was loved by all that attended his funeral and visitation. I enjoyed the reading about the various coping methods in the notes for Chapter Three and found them very helpful in dealing with my own grief. This was especially true of the journal writing.
In Chapter Four, I was not surprised at the percentage of patients discussing suicide “But a lot of my patients – maybe nine out of ten of them – speak of it at some time” (1, p. 109). The variety of emotions someone must face upon knowing they are going to die must be exasperating, burdensome and fearful. Suicide supplies an easy way to end the pain and confusion which they must deal with on a day to day basis. I agree that it was not Janice’s (Joseph’s hospice nurse) responsibility to dispose of, or question Joseph about his possession of pills. I do feel however, that if he had decided to use them that she would experience a large amount of guilt for not intervening.
In Henrietta’s case, I was disappointed with her doctor for not prescribing her pain medication sooner . A phone conversation between Janice, Henrietta’s hospice nurse, and Jim, her husband occurred: “Janice, I have learned that you want to keep Henrietta doped up. Please understand that I do not approve, and she is not to have drugs. You are not to discuss this further with Dr. Pemberton. Do you understand?” (1, 162). Jim should not have had so much control over her illness. Her doctor was not forthright enough with Jim and should have taken control of the situation earlier, without Janice’s intervention.
In Chapter Six, I enjoyed William’s new strength he attained after mastering hypnosis and control of his pain. In the notes “Fear of pain is compelling… Beyond its psychological power, evidence exists that pain and stress can inhibit immune function and may actually promote cancer” (1, 197). I don’t believe the human mind can create actual physical disorders, such as cancer, but it may inhibit fighting a disease which is already present.
It is unfortunate that homosexuals dealing with AIDS cannot find spiritual fulfillment from the Bible as it labels gays as sinners. In Sandy’s case he did not feel comfortable in his place with God, but he fulfilled his spiritual needs through his reconciliation with his mother and through the love given to him by his lover and grandmother. I agree with chaplain F. Driscoll’s statement, that “perhaps the core of hospice work… takes place after symptoms have been brought under reasonable control; that the important thing is helping patients integrate their lives so they can die with some acceptance and satisfaction” (1, p. 233).
I found Chapter Eight the most thought provoking as it discussed our society’s views of death with use of poems by Dylan Thomas and Arnold Toynbee. Their poems described our endless fight against dying and denial of death. “No longer do families want to deal with dying. They don’t want its disruption in their bedrooms, their living rooms, particularly as the end nears” (1, p. 273). I did agree with this philosophy up until reading this book and learning about the positive aspects of caring for a dying loved one in your own home. When the time comes for me to make a decision such as this, I will be more knowledgeable and likely to accept and encourage this activity in my home.
In Chapter Nine, the nurse recalls her memories in a truthful manner with pride and wisdom. She admits her mistakes, “In that moment I destroyed a trusting relationship. I’ll regret my mistake forever, and I’ve never, ever repeated it” (1, p. 290). The final message of this chapter by Howard Thurman was very touching with a lot of strong emotion behind the words “I share with you the agony of your grief… the strength of caring, the warmth of one who seeks to understand the silent storm swept barrenness of so great a loss. This I do in quiet ways that , on your lonely path, you may not walk alone…” (1, p.294).
Reading Appendix A, I strongly agreed with Jaffe and Ehrlich’s recommendations for more mandatory classes about religion, cultural, and coping with dying patients classes in the medical curriculum, because we cannot truly expect our medical staff to respond appropriately to everyone’s needs without offending certain religious and cultural beliefs if we do not help them take a step in the right direction.
In summary, my overall opinion of this book All Kinds of Love: Experiencing Hospice, by Carolyn Jaffe and Carol H. Ehrlich was excellent. This book challenged my morals and changed my views about in home care. It’s reassuring that this kind of care is available not only for myself, but also for the people I love.