The certainty of death is attended with uncertainties...
Mrs. Harding is not the kind of woman who seeks help.
She tripped over a dog's leash and fell down the short flight of wooden stairs from her balcony to the grass and discovered she was unable to rise. Despite some pain, she managed to drag herself back inside, and into her bed, where she was when her family returned home. As they had a spare wheelchair around, she just adapted to using it to get around as attempting to walk caused her excruciating pain.
That was six weeks ago. She hasn't walked since then, but her family took her to the hospital against her will finally because she stopped eating. They convinced her, eventually, that going to the hospital, being admitted, and doing everything medically possible was the best course. I'm not sure they were right.
I did a physical exam prior to admitting her, noting her to be dehydrated, malnourished, and unable to move her externally rotated and shortened right leg. She had no medical records because she could not remember the last time she had been to a doctor.
Incidentally, I noticed that most of her upper right chest wall was being eroded away by an obviously cancerous lesion. I asked her how long she had noticed something wrong with her skin there, and she told me "a few years." She hadn't shown another soul.
This kind of story has no happy ending. Trying to fix the broken hip revealed that what was left of the hip socket was a massive abscess, necessitating drainage and debridement, but no hardware to fix the problem. It also dislodged a clot, which went to her brain and cut off blood to the entire left hemisphere rendering her unable to speak clearly or move the right side of her body. Treating the stroke with blood thinners caused her to bleed into the surgical site in her leg. In the end, there was nothing we could do except hope her stroke left her unaware of her last days.
All I could think about through the last days was her last words to me before her family convinced her to change her mind: "just let me go home to die."
I wish we had.
Thursday, March 13, 2008
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8 comments:
Those of us who work in hospice are often saddened that our clients acquire our services WAY too late; thus they don't get the whole benefit of how hospice can help to "increase quality of life when quantity is no longer available."
The multiple services we provide include the expected competent physical care; pain and symptom management by medical and nursing experts; social worker and chaplain services to promote family, financial, and spiritual healing; music therapists who soothe the troubled soul with familiar music; massage therapists who are potentially more potent than morphine in alleviating certain pain; volunteers to listen to the client tell his stories one more time, run errands for the family, and be a friend;
Thinking thru medical "What ifs" and discussing them openly BEFORE need is the way to ameliorate the in-fighting, second-guessing, and guilting that often proliferate in end-of-life situations.
This is especially typical in families with one offspring near Mom & Dad, taking care of them regularly, and seeing that they are ready to go, VS. the offspring who flies in from Arizona and thinks Mom should fight the disease more and "not give up." (or the reverse.)
ATTENTION EVERYBODY: make these decisions NOW to help relieve stress on your caregivers -- we ourselves are facing this now, and it makes the whole situation much more difficult.
Get in order your will, living will, and powers of attorney for health care and for legal decisions. Even those of you with no kids -- SOMEONE is gonna have to make decisions for you if you become incapacitated. Make it someone you trust and with whom you've had some serious discussions.
I'm currently working on getting a living will and healthcare agent POA together for myself. My mother died several weeks ago in hospice; they were wonderful. Her children all agreed that she should not get a feeding tube when she stopped eating. Her husband had to be talked into it, but I don't think it was a hard sell with him.
She was suffering terribly. I am so thankful to hospice for their compassionate care. I did not get to see my mother conscious after she went to hospice, but I didn't want her to be awake. I do not understand why other people object to their loved ones being in medically induced comas when consciousness would be so miserable.
I spoke to my doctor in some detail about my own wishes. He said he was glad I brought it up, even though I am healthy. tmu, you are right, BEFORE is the best time to get the discussion going.
What a sad story. Do you think that you were able to make her a little more comfortable in the end?
Despite her medical history, this frightens me that no family member realized the amount of pain that she was in and forced her to get to a doctor earlier.
Then again, like you said, there is no happy ending here, regardless of what anyone could have done. Blah.
Re: doc's girl comment on the family not knowing she was in pain --
there are some REALLY independent (read: stubborn?!) older folk who would NEVER admit they are in pain or in need of assistance of ANY kind. Their independence means more to them than alleviating the pain, and admitting need of any sort seems to indicate weakness. (Again, we are dealing with this currently with elders in our own family, and i have seen this repeatedly in other families, too.)
With these folk, we or their family CANNOT force them into anything; we tread carefully to maintain respect for their wishes, while focusing on what ever the MAIN need is. As medical/social helpers, we can provide information pitched to their level of understanding, but they have the final say-so:
Ultimately, they do have autonomy -- the right to manage their affairs (unless demonstrably incompetent), and we have to let them make these choices, even when we don't agree with them, or the choices do not seem in their own best interest.
To back off in the face of such decisions is difficult & frustrating for many in the helping professions, since we (often, rightly) believe we know what would be most useful in the situation.
sigh.
Would it have made any difference if she had got medical attention right after her fall?
tmu - thank you for your comments. And for the book :)
alice - I certainly hope so. We did our best.
steve - The fall wasn't the biggest problem. Certainly it contributed, but the cancer is what killed her.
this story really touched my heart. presently my mother is very, very ill. she was also stubborn unbelievably so. i wish she could go to hospice but our family is so complicated. i love my mother very, very much.
it's nice to hear a doctor write in this way.
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