We live in a society where death and dying is better off unmentioned. We understand that everyone lives and imminently, dies but we don’t seem to understand the lurking process of dying. At the start of the semester, I had in my head that my ideal death would be in sleep or while singing at church. I never gave much thought about the present condition of my body before then or the extent that my deteriorating condition would have on my family or even the bills that would need to be paid to sustain me. I never really considered dying as a process that should be planned or even discussed with my family. I just assumed it wasn’t an option. However, I learned in this class that dying can be the most costly and painful experience and that most likely, I will end up dying in a hospital and not the place of my choice with the other 70% of Americans. I learned that I live in a society where the people who should be working to sustain my life can’t even empathize with me and consequently, see me only as a barrage of vital signs. Dying is a time that should be when a person is surrounded by those who care but instead are alone and feel purposeless. I live in a society that would make it hard for me to “age in place” and solely, wants to “make gray gold”; a society that forces young women to be the primary caregiver of her elderly parents because she cannot trust that the people who are trained to take care of her parents would actually take care of them. One thing that is worth taking away from this class is making sure that I know the wishes of my aging family members. Although, having this conversation makes the inevitability of death more real, it can serve to bring our family close together now which is what really matters.
For our final process reflection, I’d like to touch on something we only started talking about in the final few weeks of class. Right before Thanksgiving, professor Guseva challenged us to have our own version of the Conversation Project with our families. Honestly, I didn’t think I would actually do it, but the night before thanksgiving it happened and suddenly I understood something I had never quite understood before. My Mom, Dad, sister and I were lounging in my parents’ room after a big dinner with lots of elderly family members and I spontaneously decided to tell them that we had been learning about a movement that was encouraging people to talk with their families about the level of care each member would want in the even that the other members had to make a decision about the life of their loved one.
The attitude that we have around death, and death denying itself is so powerful that my sister, who received a masters in public health last year, tried shut it down before anyone could even answer. And then my Dad responded that he wouldn’t want us to go to extreme measures to resuscitate him if it would mean his quality of life would be poor. To that, my Mom, half kidding, said “Well we’ll see about that…I’ll make the decision if I think otherwise.”
And then I realized that in my incredibly tight-knit, but practical, well-educated family, we love each other too much to have this conversation, or at least that’s what we tell ourselves. Death denying goes beyond the doctor-patient setting or the patient-self dynamic; we try to protect our loved ones so much that we’re unwilling to even consider the possibility of death. From a more cynical point of view, it’s the only guarantee we have in this life and yet we cannot accept it even when we know we need to talk about it. This moment really made me realize that if my own family can’t handle this, we need to reconstruct the cultural boundary around death, and we need to do so immediately.
In the article, “Tip-Toeing Toward Conversations About Death”, by Martha Bebinger, the evolvement of health care in regards to death is discussed. Bebinger stated that a new law in Massachusetts was passed, “urges more of us to make preparations for these wrenching experiences by requiring that doctors offer information on end-of-life care to “appropriate” patients.” This is a huge step for health care. Most of the time doctors only focused on saving patients lives, not making them comfortable for their death.
This huge step in health care is really important because families and patients should be able to live the last days of their lives in a way that makes them the most comfortable. I fully support this new law. However, it brings about a few questions. With this new evolvement in health care will assisted suicide soon be legalized in Massachusetts and other states?
Imagining a family member dying is something nobody wants to do. However, death is one of the few things that is guaranteed in the world. Many times, a person’s loved one will die or be put on life support unexpectedly, and it is the duty of their closest loved one to make all the big decisions… whether to resuscitate, pull the plug, or perform a risky procedure. This stressful decisions can be alleviated by having an “end of life” talk in which you talk to family members and loved ones about what action they would prefer to be taken if they are ever in such a dire situation. Many families are encouraged to have this talk, and my question is, what are the benefits to having this talk? Are there consequences? When is the best time to talk about this?
Through the last view lectures, we learned many aspects of end of life care, such as being in the intensive care unit, in nursing homes, and in hospice care. The main overall view we can get from these aspects is we need to change our view of death, and make sure the patient gets what they want or deserve. Maybe they would not prefer treatment and rather die in the hands of their loved ones or near them, therefore sending them not to ICUs but rather to hospice facilities or just the comfort of home. Maybe the old would rather be living their own lives, like those in the neighborhood for the elderly, instead of being monitored for their own health. This would lead us to believe that we need a change in how we view death and aging.
Whereas death may be viewed as a terrible thing and prevented, we should treat is as an inevitable situation and have the patient be the one in control when it is their own death. Death should not be a taboo subject, but again it should be embraced when the time has come. In this state, the most optimal thing to do would be allowing the patient the most comfort they can afford. Aging should be viewed in a similar fashion. People who are aging should not be viewed as feeble or fragile and have to be looked for (unless they have to due to a condition such as Alzheimer’s) but rather looked as capable individuals who have their own wants or needs. Rather then confine them because they are close to death, allow them to do whatever they want because they almost have no more life to live. There is a shift toward this view, but a lot more thought would be needed to fully push the view toward the main picture and have it embraced by everyone. At this point, will we be able to actually conquer death: when we accept it and gain a sense of comfort from it.
After reading “Fighting to Honor a Father’s Last Wish: To Die at Home,” I have to wonder what could possibly be done to change our current system of elder care and end-of-life care. If the system continues to be largely run for profit, then we are never going to get to a point where we stop spending so much money on unwanted medical care and start investing more in social services. My questions revolve around that idea. What can be done to incentivize home health care and social services? For those who are truly too sick to be cared for at home, what can be done to improve treatment in nursing homes and hospitals? If these institutions are turning such a profit, why is there such a staffing shortage? Surely, they can afford to hire more staff, which is frequently stated to be a way to improve conditions in these settings. Hopefully, changes can be made soon, so that less people have to endure what Joseph Andrey did in his last months of life and more elderly people can die at home, if they so wish.
I have been lucky enough to get to know my great grand mother. As the wheel of life turns however, I also had to experience her end of life care and the approach that my family took. My parents involved me a lot into the situation even though my young age. I’m grateful since this experience opened my eyes in regard to death and the meaning that life has. At the age of 96 , after years at home, with my greatgrandmother being completely dependent onto my grandmother, my greatgrandmother, when understood that her time had come, actively decided to stop being under medications, eating and even drinking. What could my family do in front of such a strong decision? Was it right to attach her to machines and force her to a vegetative life that wouldn’t have honored the amazing woman she was and the harshness that she overcame in life. We all stayed next to her, gave all the love we could and accepted her decision if that was what she wanted to do. She looked happy serene. I remember my tears in front of her decision asking myself how a human being could be so strong to take such an approach towards death.
After reading Nina Berstein’s article I started questioning myself: “ How can the context surrounding us affect the individual’s approach to dying and the one of his family? “ In my country in fact, having a public health system, the approach to end of life care is much more different and in a way more free to follow the course of nature. Having a for-profit mechanism, as described in the article, determines how an individual has to die. What is therefore the sense of expressing your will on your death, if at the end, the envy of money of the society you live in, puts in second place the peaceful desire of his citizens, among which many of them have helped in the past make this country the place that it is now? Is an individual really free to express how he wants to die, in the for-profit system that the end of life care has become in the United States?
In the New York Times article “Fighting to Honor a Father’s Last Wish: To Die at Home”, we are introduced Ms. Stefanides and her dying father, Mr. Andrey, and their battle with the healthcare system. Unfortunately, Ms. Stefanides could not afford out-of-pocket home care, and though her father qualified for both Medicaid and Medicare, “the flow of money seemed to bypass what he actually wanted at the end of life”. In addition to emphasizing that Mr. Andrey couldn’t even be granted his basic wish to die at home, the article further talked about all the abuse that occurs at rehabilitation homes that care for the elderly. Ms. Stefanides recalled her own mother’s month-long abuse and eventual death in the hospice, and refused to subject her father to that kind of tragedy. Unfortunately her options were incredibly slim, and she felt that the doctors were “bullying her to disregard her father’s wishes”, and they basically wanted him sent somewhere else to die.
This incredibly touching and sad article sheds light on the difficult position many are faced with due to a failing healthcare and abusive system. One must wonder if all of this heartache for Ms. Stefanides and her father were worth it, and if his dying wish should’ve been granted in the first place. This brings up the issue of the doctor-patient relationship, and how invested a doctor should truly during a patient’s final years. And so I ask – Where do we draw the line to how much say a doctor has during a patient’s time for his/her death? Should the patient have full ownership over their body and where they will rest during their final time, or does the doctor know what is best?
After reading the article, “Fighting to Honor a Father’s Last Wish: To Die at Home”, it makes me sad at how companies want to make money off of people who are dying. They pass them around like hot potatoes in order to obtain the most amount of money from them before they pass. It is sad to think that there are people like Mr. Andrey that just want to die at home but are prevented from doing so because they are near dying but not near enough.
What gives us the ability to “schedule” death?
In the article “Tip-Toeing towards Conversations about Death”, one thing that stood out to me was when the writer states “the hope is that when a doctor hands a patient a pamphlet, it may start a conversation.” Hoping to start a conversation using a pamphlet sounds a bit insensitive and I can only wonder what the pamphlet contains. We shouldn’t have to rely on a piece of paper to convey the emotions when should emit when speaking to a person about dying.
If emotions and empathy are characteristics that deem us human, why is it so hard for us to use emotions and empathy when approaching death?