From the first page, I was emotionally attached and almost wept, having been reminded of my mother's and twin brother's recent deaths. The hospice experience is different in almost all cases. In my case, my mother’s hospice experience was reprehensible. My brother’s was laudable. The book explained the difference between my brother's care in a facility that had control over him, my mother-in-law’s in an assisted living facility where she had control over her own wishes, and my mother’s whose care was in my hands. I believe that I was deceived by hospice workers, and that she was led to a swift death. The book could not corroborate that, but some of the experiences I read about confirmed my beliefs.
Since death is never the desired outcome for any of us, I hoped the book would shed some new light on how to make it easier to deal with, regardless of whether or not it was someone else’s diagnosis that was being faced, or eventually, my own. For myself, I have made the decision to have palliative care, rather than extreme measures to keep me alive in pain and with no quality of life; however, I wanted to explore my options and hoped this book would provide a more nuanced approach to the subject.
The author’s research and experience with this subject is obvious as she lays out the concerns of those in the medical services industry, those occupied by religious issues, and the legal options that are available in different situations. She presents the thoughts of patients, at the end of their lives, and bureaucracies that have to carry out their wishes. She describes her feelings as a hospice worker, explaining that she preferred some patients to others. I found her inability to show compassion for a prisoner, while she was only too happy to not only show compassion, but to develop a long term relationship with a wealthy patient, a bit disconcerting, disingenuous, and off-putting. I believe that when it comes to dying, the needs of all should be considered equal. It made me doubt her sincerity and purpose in writing the book. I began to feel that it was to assuage her own guilt and grief, rather than to truly seek a method that would provide “The Good Death”. Also, I would have preferred more recent references. Hers were at least 3 years old and many were older, at the time of publication.
I did learn a lot, however, since I had not realized that there was such a marked difference in the approach to dying among the many disparate groups lobbying for and against the right to die. I had not realized that, in some cases, choosing not to have life saving efforts could be ignored by the hospital, the prison or the government. I had not realized that a hospitalist, with no relationship to you, no idea of your former vitality, strength of character or fortitude, would be the one to instruct you on your future, its darkest possibilities as well as its brightest. Making such a momentous decision, to have or refuse care, at a time when you were suffering and trying to recover, might not be the optimal moment. Who decides if you will have a quality of life? Do they know what you consider a quality of life. My mother said she would not mind living in a wheelchair if she could still do the simple things she enjoyed, like family, friends, reading, and watching TV.
I had not realized that the disabled, as a group, were against a patient’s right to die because they believe that they will be induced to remove themselves from life support by a member of the medical staff, like a hospitalist, who believes they are irredeemable because of what they perceive as their poor quality of life, but what is, to that disabled person, a life they are accustomed to and enjoy, a life they wish to continue. I had not realized that in a Catholic hospital, a patient’s wish to die could be ignored. I found it strange that the “church” would think that being attached to tubes was perhaps G-d’s will, in some way and not actually external human intervention that interferes with G-d’s will. I had not realized that in prison, a patient cannot choose to end his life and refuse treatment, because society cannot be robbed of the opportunity to punish the prisoner, even if that prisoner has been sentenced to death. Society, apparently, only has the right to pull that plug. Each group views the right to die, or to prevent the right to die, from its own lens. Many simply refuse to hear any other side of the argument, but their own. I was not completely sure which view the author preferred, even at the end of the book. The only thing I did conclude, like the author, is that there is no good death. No one prefers to die, unless under extreme duress, and at that time, they might not be fully capable of making such a decision. Still, I myself prefer to make the judgment and decide how I want to be treated at the end of my life, while I am in my right mind and healthy enough to choose my own path.
The laws are not uniform from place to place, hospital, home, prison, religious hospital, catholic doctor, lay doctor, or lay hospital, and guidance is lacking for the caregiver and guardian. It is imperative that the patient or guardian understand his/her rights when in such a dire situation.
Medical personnel often opt out of treatments that they know will not guarantee them a cure, but will surely guarantee that their final days are filled with discomfort. Often, those that opt out, live longer because they are not being fed poison and deal with a different kind of stress. If one is able to afford help and medications to alleviate pain, it seems that the conditions at home make for a happier recovery as the patient can lead a normal life for as long as possible.
There are definite drawbacks to our health care system. Nurses aides who care for the ill and infirm are often paid less to care for an adult, than they are paid to care for a child, which is a far more pleasant experience when bodily functions fail. Doctors are often poorly trained when it comes to explaining the options we have at the end of our lives. Bureaucracies often unfairly dictate our options to us. Each patient really needs to be evaluated separately, so that the doctor/custodian/protector/warden/priest/rabbi approaches the conversation in a tailor made way for that person and is not giving a one-size fits all canned speech which could be so demoralizing that the patient loses all hope, even to enjoy some peace at the end of his days .
I won this book from librarything.com in exchange for an honest review.