let me start this by saying i am in no way an expert on death and dying. i am not a doctor, or a medical writer, or even an amateur who has read a lot. perhaps more important, i do not have as of yet any major life threatening diseases. i have two chronic conditions, asthma and depression, either of which can be fatal, but also, with decent medical care, can be controlled with medications and to some extent life-style choices. i want to emphasize this because i have strong feelings of what i would want to do facing a fatal illness, and that i am fully aware of the huge gap between what-i-would-do-if and what-i-will-do-now that i have this condition. however, more important than how accurate i am in self-predicting is that i am [a] glad that more options are being publicized and [b] sad that others are ignored.
Dr. susan love recently posted on facebook a terrific new york times article about doctors with fatal illnesses choosing to end cure-aimed or life-prolonging treatment when their illnesses have reached a clear point of no return. instead these doctors opt for palliative care that leaves them in good enough shape to live at home with their families and to do the things they want as long as they can. in place of a possible few weeks longer spent physically but painfully alive in the wake of further chemo, radiation, or surgery, they have chosen quality over quantity. the article lamented that this option is not more publicized and that the medical profession in general does little to promote it, or even to suggest it to patients as a possibility.
what concerns me, though, is the given that the only options mentioned are the conventional, die-in-hospital-tied-to-tubes-and-miserable or die- at-home-surrounded-by-loved-ones. there are at least two other possibilities that i would like to see get more press.
does everyone want to be surrounded by loved ones when they are in the last stages of disease, and to be with these loved ones at the moment of death? maybe. probably more would than wouldn't, given the choice. but what i think now that i want is to be somewhere far from anyone i know, being treated palliatively by paid strangers to whom i owe no debt of love and who owe me no emotion beyond
friendly, professional compassion. i want books and a television, a computer if i'm able to write, and solitude. maybe a nice volunteer to occasionally share opinions on the tv shows i watch. mortality is a humbling enough experience; i don't need to be more humbled by the survival of healthy, hovering loved ones. if i'm alone in feeling like that, it doesn't matter if this possibility gets attention. but i doubt that i am--i'm not so original as all that. nor do i think it's a particularly better way to be. but it's one way to be.
the other concern is that i think the options of suicide, assisted or not, needs to be addressed. i know it is addressed in articles as a separate topic, but i'd like to see it discussed anywhere alternatives to extended medical treatment are discussed. that its illegality needs be abandoned is to me a given. but the stigma needs also to go. i don't think it's crazy or wrong to want to die, and to effect that death oneself, at a certain point of pain, decay, helplessness. 'who's life is it anyway?' is a very legitimate question. i don't want to die like my mother did, of an illness that paralyzed her so totally that she couldn't finally let us know if she needed to scratch an itch. in her more mobile times, she tried, feebly, to smother herself by putting a pillow over her face. she had no strength to make it hold, even if she'd been allowed to continue. had she wished to kill herself earlier? we had no way of knowing. i want the choice of suicide, if i have a progressive and paralyzing disease like she did, and i want the knowledge of how to do it, with or without medical assistance.
i would hope, as would many of us, that all this would become moot to me-- that like my grandfather, who was a fairly healthy 80-something when as he was he reaching up to get what he wanted at a department store, had a sudden, instantly fatal heart attack. like woody allen, i don't want to be there when i die. if that causes some confusion in the transition to the next life, i'll deal with it. immortality must have its resources. meanwhile, if fate decides otherwise, i want a range of workable alternatives, from the right to cling to every last minute of life with every medical treatment possible, to palliative care, at home or alone, to suicide, and to whatever other possibilities might exist. in the unwinnable battle against death, let me fall on my own painless sword.
Dr. susan love recently posted on facebook a terrific new york times article about doctors with fatal illnesses choosing to end cure-aimed or life-prolonging treatment when their illnesses have reached a clear point of no return. instead these doctors opt for palliative care that leaves them in good enough shape to live at home with their families and to do the things they want as long as they can. in place of a possible few weeks longer spent physically but painfully alive in the wake of further chemo, radiation, or surgery, they have chosen quality over quantity. the article lamented that this option is not more publicized and that the medical profession in general does little to promote it, or even to suggest it to patients as a possibility.
what concerns me, though, is the given that the only options mentioned are the conventional, die-in-hospital-tied-to-tubes-and-miserable or die- at-home-surrounded-by-loved-ones. there are at least two other possibilities that i would like to see get more press.
does everyone want to be surrounded by loved ones when they are in the last stages of disease, and to be with these loved ones at the moment of death? maybe. probably more would than wouldn't, given the choice. but what i think now that i want is to be somewhere far from anyone i know, being treated palliatively by paid strangers to whom i owe no debt of love and who owe me no emotion beyond
friendly, professional compassion. i want books and a television, a computer if i'm able to write, and solitude. maybe a nice volunteer to occasionally share opinions on the tv shows i watch. mortality is a humbling enough experience; i don't need to be more humbled by the survival of healthy, hovering loved ones. if i'm alone in feeling like that, it doesn't matter if this possibility gets attention. but i doubt that i am--i'm not so original as all that. nor do i think it's a particularly better way to be. but it's one way to be.
the other concern is that i think the options of suicide, assisted or not, needs to be addressed. i know it is addressed in articles as a separate topic, but i'd like to see it discussed anywhere alternatives to extended medical treatment are discussed. that its illegality needs be abandoned is to me a given. but the stigma needs also to go. i don't think it's crazy or wrong to want to die, and to effect that death oneself, at a certain point of pain, decay, helplessness. 'who's life is it anyway?' is a very legitimate question. i don't want to die like my mother did, of an illness that paralyzed her so totally that she couldn't finally let us know if she needed to scratch an itch. in her more mobile times, she tried, feebly, to smother herself by putting a pillow over her face. she had no strength to make it hold, even if she'd been allowed to continue. had she wished to kill herself earlier? we had no way of knowing. i want the choice of suicide, if i have a progressive and paralyzing disease like she did, and i want the knowledge of how to do it, with or without medical assistance.
i would hope, as would many of us, that all this would become moot to me-- that like my grandfather, who was a fairly healthy 80-something when as he was he reaching up to get what he wanted at a department store, had a sudden, instantly fatal heart attack. like woody allen, i don't want to be there when i die. if that causes some confusion in the transition to the next life, i'll deal with it. immortality must have its resources. meanwhile, if fate decides otherwise, i want a range of workable alternatives, from the right to cling to every last minute of life with every medical treatment possible, to palliative care, at home or alone, to suicide, and to whatever other possibilities might exist. in the unwinnable battle against death, let me fall on my own painless sword.
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