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Quote of the Day: Living and Dying
“If a person has a serious, complex illness, palliative specialists are happy to help. The ones in the study discussed with the patients their goals and priorities for if and when their condition worsened. The result: those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives—and they lived 25% longer. In other words, our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussions were an experimental drug, the FDA would approve it.” — Atul Gawande, in his book, Being Mortal
Early in my work as a hospice volunteer, we were told about medical doctors who refused to acknowledge that it was time for a patient to let go of hopeless measures for treatment; it was the doctor’s job, after all, to sustain life. Unfortunately, some patients went through horrible suffering because they feared death and because a doctor would not be candid with them about their situations; family members also participated in this plan, unable to face the truth.
Today, more doctors are educated on the role of palliative care; they are realizing that their honest discussions with patients can be so helpful and comforting when the patients are suffering and approaching their last days. I’m aware that a patient might give up “too soon” on his or her treatment (in the opinion of some), but when a person is clearly at the end of one’s life, isn’t that a righteous option?
Published in Culture
I have no way of knowing for sure until and if the time arrives to make a life or death decision for myself. But if I’m faced with a difficult decision about extending my life, I expect to have a medical doctor and a palliative care specialist involved. To try to sustain my life through painful and debilitating treatment when the odds of extending my life are slim, is a foolish venture.
When my older brother had leukemia, they tried several new therapies, but none of them worked. Eventually, when it was clear that they hadn’t worked, the decision was made to switch to “palliative” care. They didn’t think he would last long enough to make it to Hospice, so he stayed on the same cancer ward where he had been treated.
Those nurses – and to a lesser extent the doctors – were amazing. They explained what “palliative care” entailed and were with us through the whole process.
I don’t think I could ever do the job they did without being permanently depressed, but I am eternally grateful that there are nurses like that out there. They were literally a Godsend.
Maybe but only after several Billion dollars of mostly useless studies proving safety and effectiveness to the point of near absurdity. So I plan to make my own decisions about such things with or without their expert guidance. I will consult a Physician and will take into serious consideration everything he says though not seeing him as some all wise demi-god.
So many people misunderstand palliative care; either it’s not explained well, or in their stress, they don’t hear it. I’m so glad you had a good experience with the whole process.
That’s another big problem, @okiesailor: people treat their doctors like they are on pedestals. That’s nonsense. I kid back and forth with my family doctor: I saw him for an annual check-up and to have him renew the few meds I get, and everything was in such good shape, he said, “So why are you here?!” I cracked up. It was his way of acknowledging that I take good care of myself, plus I’m so blessed with good health. And we both know that could change at any time.
SQ, I’d want to be sure of competent evaluation of/medication for depression periodically, at relevant points in the process; as well as coordination with qualified, affiliated chaplains – who can assist with relational/spiritual ‘loose ends’ – as well as backing up others on the team…Just sayin’. :-)
My Father died of leukemia 10 years ago, after many years of very difficult chemo. Dad underwent those many years of life prolonging, but often agonizing treatments because he did not want Mom to be left alone. That was his choice, and his noble cause. On Good Friday of that year the staff informed us they could offer no further treatments, and palliative care – ie. hospice was the only option left. We took Dad home and supported the palliative treatments until the end. He remained humble, cheerful, courageous, gracious and fully cognizant throughout. He taught me everything in life, and much more in death. I found his death to be one of the most loving events I have ever experienced – I often describe it as beautiful.
With this very positive experience with end of life palliative care, I still have reservations about government and insurance agencies dictating terms of care. I fear the “death panels” warned of by Obamacare critics, where profit and available resources dictate whether to choose plans of further treatment vs palliative care. Many dystopian stories have been written about limited resources creating morally corrupt end of life scenarios.
Doctors and administrators hold great sway over people with compromised health, especially when their situations are complicated with financial limitations. There will always be hard choices to make. In the real world, these choices may be influenced more by economics and corporate policy rather than compassion.
Absolutely, @nandapanjandrum. Very good advice! Especially the chaplain! ;-)
I am so very glad of your loving experience with your father, @nohaaj. And your caution is appropriate and understandable. A good health care surrogate, someone who knows your wishes and preferably knows you well, can help fight some of the potential battles.
There are many such examples in countries with universal medical coverage.
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