1 Lauren Clouse 11/20/2009 Psychology 403 Friday 3:15- 5:45
A Reflection on Death “The bitterest tears shed over graves are for words left unsaid and deeds left undone” Harriet Beecher Stowe
Before even beginning this class we were all asked to complete a mandatory interview session with our instructor, Sam Shapiro. The question that required the most thought, turned out to be the most basic. This question was “Why do you want to take this class?” I signed up for this class because I have an interest in Death and Dying, as morbid as some might think that is. However that was not the only reason, on December 22, 2008 my life changed with the passing of my mother from cancer. The title of the class Lessons from the dying, intrigued me because there is so much you can learn from someone who is dying. I wanted to read about others who had gone through the same experience as me, and possibly gain insight in to what was possibly going on in my own mother’s head. I am grateful for my decision to sign up for this class because it aided in helping me decide that grief counseling was something I wanted pursue as a career. I had all the pieces of the puzzle, and this class really helped me fit them together through the different themes discussed. In more words or less, this is why I decided to sign up for this class. One of the most common and important theme we learned was the idea of dying well.
Dying Well: How is this possible?
Before starting this class if I were to ever hear someone say, “She died a good death” I would be very confused. How can any death be considered good? However, upon reading the books I learned that there are in fact differences in what would be considered a good death, and a bad death. Marilyn Webb says it best, “To die naturally is to find a way to have a graceful death when the prognosis is terminal and further treatments are of questionable value.” When someone knows their end is near, it is often hard for them to accept this news. However, with the help of family and counseling this is something that can be achieved. I do not know a single person that would like to spend their final moments sick from the treatments or in so much pain they wish their time was now. To die, what we call a good death, a person has to be able to let go of past issues and connect with their loved ones for one last time. In class we stressed this issue a lot, especially in the case we read about Michael. Reading, and then watching the boy pass away on film really put in perspective what we have been reading throughout the whole semester. For Mike to overcome his differences with the mother to let her come see her son for one last time really showed you how important it is for both the dying, as well as the family to come together during this time. I believe Michael needed her presence before he could pass on because not long after she arrived, he moved on from this life. For the family having these loose ends tied up affects them in a different way. Since they are the ones left behind, often if things are not taken care of before death, they suffer the most. There are always those “what if’s” or “I should have’s” running through your mind. Dying a good death can be extended to both people involved, the patient as well as the family. In some ways we will all have regrets, I know I do. I should have spent more time at home, I shouldn’t have moved to Hawaii so I could have been around her more. In my mind though my mom did die a good death, surrounded by me and my dad. There was no pain involved thanks to the help of the Hospice. Although you may miss them
3 in a way that can not be expressed, there is comfort in knowing you were the one who was there in those last moments. For families of people who die suddenly, they do not have this opportunity. When reading these books, you often forget these are real people and real experiences you are looking at. The case that stuck out the most to me when examining what a good death, was the very first case in Dr. Byock’s book, describing the passing of his father. He passed away in the comfort of his son’s home surrounded by the one’s he loved the most. His father went through three cycles in his death. At first he pretended like everything was okay, then he became slightly angry and stubborn when he had to be taken care of, and finally acceptance. Some people get stuck in that middle phase, up until their dying day. Mr. Byock learned with the help of his family to be taken care of and give up that control he help on to. In turn, he died a good death beside his family. Dr. Byock’s father had to re-learn to be taken care of, which brings me to my next theme.
Re-learning to be taken care: Roles Reversed Being taken care of is not something that comes easy, especially to older individuals. We start off at birth where everything is taken care of for us and gradually become more independent. Our society puts great emphasis on being able to sustain yourself, which makes the tribulations of dying more difficult mentally and physically. Not only are we unable to do things physically, but mentally we lose the pride we had in being able to sustain ourselves. Such as the case with my mother, only up until her last day did she allow people to do things for her. It was hard for her to accept she could no longer do these tasks and I was now the one helping her when she had been the one taking care of me for so long. Most people see helping their loved ones in their time of great need as a true blessing and it can even be a spiritual experience.
In Dr. Byock’s book he says it best; “His decision to allow himself to be totally cared for - dressed and undressed, toileted and turned - by his family was his final gift to us.” His family will always have that memory of being able to help someone who they loved very much and will have no feelings of regret later in life. Extending yourself to care for someone in this way is not even a question for more people, it’s a natural instinct we have inside ourselves. Sometimes even the smallest of gestures can mean the most to people. Such as; moistening the lips with ice, or massaging their feet or legs to get blood flowing to their extremities. With this being said, people will sometimes feel resentful that they spent so much time focused on them and zero on themselves. This is where counseling and the help of a hospice nurse can alleviate some of these feelings. It is natural for people to become burned out watching their loved one leave this world right in front of their eyes. For the one who is re learning to be taken care of this is a very scary time for them. The way I translate their stubbornness to let someone take care of them fully is because this would be like letting go and accepting what is happening to them. If they were to give up this control, then they have given up control over the rest of their remaining days. With the help of family they can turn this experience around. If a person can learn to fully embrace what is happening and let someone aide in their most intimate moments then a transformation within themselves can occur. They are now aware there is nothing left undone, love is being expressed and now goodbyes can now begin to be said. Of course not every situation is the same, but this is ideal. I wish I would have known why my mother was going through these emotions before hand. Sometimes I found myself being angry at the fact that she was not allowing my father or I to do certain things for her. I did not understand until further reading and talking about it in class why someone who clearly needs help will not permit it. Because of todays wonderful hospice workers, most families can aide their loved one acceptance and re learning to be taken
5 care of. However, without the hospice, individuals would die a harder death surrounded by nurses and doctors whose goal is to cure and not comfort you during end of life issues.
Why Hospice? How it improves life at the end life As for most people who do not have a friend or family member in a hospice most people do not even know what it is. I know I had no idea until my mother entered one in our home that it is a place where people come to die peacefully. Debbie explained it to us as an option for patients who have 6 months or less to live. It is so much more than that though. They have highly skilled nurses, and people who know how to talk to grieving families and ill patients. In Hennezel’s book it captured my attention through out every page. She was very blessed to be able to share those final moments with her patients and be there in their most intimate moments. The focus of a hospice is to use palliative care, instead of finding a “cure.” The focus is to lessen the severity of pain and disease symptoms, instead of reversing the progression of the disease. They improve the quality of life for the dying individual, which is something many families are grateful for. Having Debbie show us around the hospice here in Hawaii, was an amazing experience. She shared with us what they do and showed us around the house. It was so inspirational to see the house from the inside out. From the discreet decor on the outside, to the inside decorations it felt like any other home. There was not any medical equipment surrounding the house, nor could you tell it was a hospice from the outside. This made the patients inside feel comfortable and allows them to live a somewhat normal life. Since the point is not to cure the disease, pain management is a daily way of life. When reading the books, I noticed many times that when the patient was in the hospital they were treated as less of an individual than someone who could be
helped. Doctors will see people with terminal illnesses as a failure, in which case they do not pay enough attention to them. They could not be more wrong in doing this, because people with these illnesses require more care and attention than someone who is considered “curable.” If there was not a hospice program a lot of these people would not be able to die well, as discussed earlier. Learning and listening to what Debbie does as her job really inspired me to pursue my calling in helping others in their journey through this difficult time. Ever since my mother’s passing I felt a strong urge to connect with others who had gone through the same since no one really knows how you feel until they themselves experience it. Hospice, and grief counseling would be a beneficial way to answer these urges I have. Before entering this class I had no idea on the impact hospice’s have made in the medicinal world. Their goal is not only on the patient, but also in helping the family transition to a different way of life during this time. Trained individuals will help individual work out any problems he or she has left unresolved so when it is their time to let go, there will be no reserves. However, hospice care does not end at the end of life, they also help the family cope with the loss of their loved one and making sure they are partaking in a healthy grieving process. The patient has total control of how they want to live out their final days, and hospice nurses make sure their every need is met. The point is to have people think back and think “they died, a good death.” By good death people mean not in pain and surrounded by the ones they love. It also provides people a chance to die with peace and dignity. In a lot of the cases we read, that was their main issue, being able to die with dignity and not wasting away in their own filth. They will make sure you are always bathed and not living a life you wouldn’t life had you’d been able to take care of yourself. Without the aide of hospices around the world, many families would be in more distress than needed during this difficult time.
7 The Journey We Take: The role of the family When I think about having to face my own death, I can only imagine all the thoughts and images that would be going through my head at this time. We talked a lot about this phase people will go through whether it be drawing people closer or pushing them away while in a depressive state, the biggest theme seems to be coming together in the end. While I am sure people do not say to themselves I am glad this is happening to me. People can turn it around to be a spiritual experience with some meaning behind it. People are always searching for that answer and it can only be found within themselves. While others search inside for this meaning, other families, like Michael from the video can find it in a community, and friends and family. Socially we are conditioned to believe that dying is something to be feared. However, are we fearing it because it is unknown? Or perhaps we are afraid of all that we will be missing. It is probably a mixture of the two because no one can really know what will happen to your soul when you die, though most have a clear faith in what they believe will. When someone is told that they are dying another thought that crosses their mind is how will they die, will it be painful, will they be a burden, and how long will they have to suffer? We still have a long way to go in the medicine world before all these questions can be answered positively. With the health care crisis today many people cannot afford medical care, and hospice care is not an option many people know about. If a person feels they are being a burden, they will feel this way everyday of his or her life. As Byock put, it being a burden will be “..what his life has come to mean. Though his wife and children may affectionately acknowledge his years of love and selfless devotion, he will fret, feel worthless, and suffer. Partly due to how the medical world sees the terminally ill, they limit your resources and make room for the younger crowd who is more able to contribute to society. No one wants to feel they are being a strain on their family, and often they will put
their needs behind others. My mother did that almost everyday of her life, if she was in pain she would hardly tell anyone. Or if she was hungry she would hardly ask anyone to get things for her, or even announce she was hungry. With that being said, around the last week of my mother’s life she started sleeping more and every now and then she would ask you to help her. I found this odd because she never wanted me to help her even get up. One trip to the hospital I even had to dress her, something must have been wrong if she would let me do this. That is one gift they can give back to you, because all you want to do is help, it is the only way you feel useful in an uncontrollable situation.
End of Life Decision: It’s your right In anyones dream situation you would be able to decide, how and when you will die. Since that is not a realistic situation, you can however decide these questions to some extent. When we visited the hospice we were handed health directive forms, because it is never too soon to start making these decisions now because you never know what life will throw at you. For instance, in a few of the reading’s from Webb’s book, she described the tragic suffering of two patients who were in a irreversible coma. This was before taking out someone’s feeding tubes was not seen as murder. The families described had to endure so much more pain than necessary to fight the legal system and ultimately let their daughters die a peaceful death. In class we discussed a lot about assisted suicide, and what is the difference. If you are taking out someone’s feeding tubes, is that helping them die? The truth is yes, but you are not prolonging or shortening their life course anymore than is already has been. Your body at some point stops needing those nutrients and at times you cannot even swallow which leads to an uncomfortable situation. With a health care directive your family will not have to make these tough choices for you, and then
9 later wonder if they made the right one. They will know these were your wishes and it is okay to say no to artificial breathing or food. Living wills are also another important item to be taken care of before your death. Death is inevitable for everyone, no one escapes life alive. However, it is beneficial to you and your family to have finances and other issues squared away in the event of your death. My mother had a living will, as well as a form that said she would refuse any artificial treatments. She found that for herself this would be no way to live and would not want our family to have to suffer both financially and emotionally during that time. She also made a binder of all the information my father or myself will need in the event of her death. She included doctor’s information, where certain items were in the house, as well as bill and my school information. When she passed, she never got to finish that binder so my father and I were a bit lost during this year. When you have someone that takes care of everything suddenly leave your life it can feel as your world came crashing down on you. I believe though had she not started to prepare and had gotten those things together, then we would be in a lot worse of a situation. My father nor myself would have never been able to say yes to stopping her feeding. Not to mention, everyday I would wonder if I made the right choice and had I not said yes, would she still be here? That is something no one should have to wonder.
Grieving: is there a correct way? In every book I have read on grieving, and what to expect, they all lay out a sort of timeline in which it will occur, through denial, to acceptance. I always thought I was the odd one because I experience these emotions out of order. It has been almost a year and I feel like I am starting the grieving process either all over again, or just now. In class I asked Debbie if
sometimes people will experience it months after it happened. Her answer made me feel more comfortable because she said that people will sometimes suppress their feelings and not everyone will go through these emotions right away. I feel the only people who can really understand you are those who have gone through the process and can relate to your feelings. Reading these books and listening to other classmates has really helped. When we talked about grief and loss I paid the most attention to the portion on the actual grieving process. How there is no order to it, although there is a healthy way and of course an unhealthy way. Unhealthy would be severe depression or thoughts about suicide. I have seen one of my friends go through this with the loss of his mother two years ago, and I vowed that I would not live my life like that because my goal now was to make my mother proud even after death. I believe some people just look at the situations differently and have different coping mechanisms. I wondered however, how do people go through the grieving process if their loved one were to die suddenly. In all the stories we read people had those final moments with their family and were able to say things to them one last time. However, what if you never got those. Would the grieving still be the same? Or would it take longer? I believe that just like I described above, everyone is different so it is hard to generalize people in one category. “The bitterest tears shed over graves are for words left unsaid and deeds left undone” My quote above sums up the general theme of this course. To never let things go unsaid or show someone how much you mean to them because one day you will not have that luxury to tell them or show them in person.