Friday, October 26, 2007

Debility Unspecified

Lorraine (not her real name, of course) is a woman in her eighties who has been slowly failing for a number of years. She's been anemic without a clear cause and has been losing interest in eating in particular and her surroundings in general. Her reclusiveness probably is also fed by her longstanding diarrhea, which commenced after bowel surgery three years ago. She's been badly depressed for many years, receiving both medicines and electroshock. Oh, there are other "diagnoses," too -- diabetes, high blood pressure, acid reflux, arthritis -- but no one disease ties everything together and explains her decline. It seemed obvious to her doctor that she was likely to die within a few months, hence the interest in hospice. She is dying, or so it seems, but it's death from a thousand paper cuts. Our word for this in hospice is "debility unspecified," sometimes called "adult failure to thrive," but in English I think it means a frail elder whose soul is slowly detaching from the world. I have been present at the moment of death and have felt the sudden departure of the soul -- something I hope to talk about in future posts -- but I am convinced that sometimes the soul leaves the body inch by inch over a long time. "Debility unspecified" is what we say when the soul leaves a gap big enough for us to notice.


So many of our parents look just like Lorraine, and the anguish of the children is palpable. One of Lorraine's daughters called me today, prompted by a decision to seek nursing home care. But what Patricia (as I will call her) really wanted was an answer to this question: can my mother's decline be reversed? She asked about intensive conventional medical treatment, physical therapy, and (to use her word) "coercing" her mother to eat.

I found myself responding on several levels. It would be easy, of course, to pigeon-hole Patricia as a child who just can't accept reality and let her mother go. There's an old line, which I think originated with Al Franken, that says "denial ain't just a river in Egypt." Over the years I've heard from unhappy family members who've said they felt pushed by hospice workers to, in effect, stop whining and face facts. Inside myself I wasn't asking Patricia to stop whining, but part of me understood her questions as a form of denial. But denial, of course, is a defense mechanism. Underneath the defenses was a child frightened about losing her mom. An adult child, but a child nonetheless. Recognizing that strong emotion, the thing being defended against, helped me keep my composure as Patricia kept going over the same ground and asking the same questions.

But I also felt myself getting angry -- not at the patient or her family, but at the health care system generally. We in medicine have transformed the public's consciousness about death. We pretend to have an answer for everything. We see disease, even death from a thousand paper cuts, as something we can reduce to an abnormal and controllable physiologic process. We have created the expectation that Lorraine's slow decline, the gradual detachment of her soul from her body, can be stopped or at least deterred indefinitely. In its inability to accept the inevitable and shift its focus from cure to comfort, modern medicine resembles the ancient Persian emperor who sent his troops into the sea with whips to persuade it not to make waves. On that level Patricia isn't in denial. She's behaving exactly as we trained her to behave.

11 comments:

  1. Precisely accurate observation. I too, have seen this way too often. Our culture turns away from death, as though it is a mistake...a failure in practicing good preventative medicine. If we are going to make preventative medicine mainstream, we should include death as a part of living.

    ReplyDelete
  2. I was really understand to your blog and more informative to all of us.congratulations on your good work on this blog.

    ReplyDelete
  3. I just picked up my Grandpa's death certificate and i could barely read the cause of death - i am now thinking it says Debility unspecified...thanks for educating people- it helps

    ReplyDelete
  4. My 92 year old mother died this September from debility unspecified. She always said that she only wanted to live to celebrate her 90th birthday. Shortly after that event, I, being her caregiver, noticed her gradual decline. In weekly updates to distant family and friends I would say that it felt like I was "losing my mother inch by inch". Her symptoms included increasing anemia, frequent UTI's and kidney infections, intestinal infections with explosive diarrhea, loss of appetite and signifant weight loss all compounded by Atrial Fib and high blood pressure. Her spirits always remained good and she was at peace with what was happening to her body. No doctor would believe me that my mother was slowly dying and refused to write an order for Hospice Care even when my mother requested it. For the 7 months preceding her death I tried with two different doctors to admit her to Hospice. Both said she did not have a Terminal Diagnosis and could not justify it. So she suffered through three more hospitalizations, a 2 month stay in skilled nursing and dozens of different anti-biotics in the last several months of her life. Her doctor fought me until the very end when he finally signed the order for Hospice Care upon her release from her last hospital stay on 9/17. She had a most peaceful death on 9/20 finally under Hospice Care.
    Sometimes I think the doctors thought that I was exaggerating her health issues so that she could be more comfortable under the care of Hospice. I was always telling them that she was not thriving. Their answer was to order more tests, drugs and blood work. Mother always refused the invasive tests much to their dismay. When I read the story about Lorraine and her diagnosis I felt vindicated.
    Thank you for educating the public and hopefully the medical field to a very real and terminal diagnosis.

    ReplyDelete
    Replies
    1. I am a sitter for hospice, and I can totally understand your feelings. My job is to be with them duting thier final hrs, and have seen many in your mother's condition. I agree that mant Drs. do not want to admit that a person is terminal without just cause. Sometimes a person is just ready, if that is the case, let them go the way they chose. If hospice can help, then let them. My husband and I did that with his mother, and it was the best thing we could have done.

      Delete
  5. My husband died 5 years ago and Hospice was a blessing to us. Dying is part of Life and I will remember what this Doctor has written. I did home hospice with assistance and kept him out of pain.
    Thank you for educating the public so eloquently.

    ReplyDelete
  6. My mother died while in so called hospice care, in my opinion they did nothing to help us or her while she was ill, and I resent the fact because my mother was 91, they just assumed it was time to die, and those in the medical field did not treat her illness as agressively as they would if she were a young person, shame on a them, they did not know my mother was a strong women who would have fought to live and not wanted to go quietly, they should have treated her symptoms not her age, and not have taken the easier route due to cost, and convenience, for them not her, just remenber this "where you are I was, and where I am you will be".

    ReplyDelete
    Replies
    1. Hospice's job is not to treat the illness, but to make the dying person comfortable. You should take issue with the dr, not hospice. And 91 is pretty old, I'm sure she had a full life.

      Delete
  7. It can be difficult to accept that someone we love is dying. It's unfortunately the case that aggressive treatment in very old people sometimes backfires and creates more suffering than it relieves -- rather like the old saying that "the cure is worse than the disease." Of course I don't know the details of your mother's situation, so all I can say is that I hope you will grieve and work through your obvious pain over time.

    ReplyDelete
    Replies
    1. My mother died a wk ago & was receiving Hospice home care but they talked me into admitting her into HHome for 5 days about 6 wks ago. The Dr took away every med that would prevent a stroke & put her on med that is known to cause strokes & death, & an anti-psychotic for no reason. She was 89 & had many strokes starting in 2005 when she began breaking bones requiring surgery. We finally got her on a med schedule that prevented another stroke for 7 yrs until they had her in Hospice Home. The strokes caused Dementia but otherwise she gained back some of her brain damage & most of her personality. She had lost most all her teeth so she couldn't hardly eat & was losing weight but was not bedridden nor needing diapers, etc until she had sev bad strokes, the 1st one as she was being d/c from HH. They actually put her in wheelchair & lied her in our car's backseat w/ her being unconscious, unable to speak, stand, move, etc. She came back around in about 36 hrs but had 2 more bad strokes. Things went down rapidly after that & she was so miserable that I actually was glad in a way when she died b/c I couldn't stand to see her like that.. My brain kept fighting itself, one minute I kept trying to force her to get better but other times I briefly let it go & wanted her out of her misery.. Now, knowing when she died, I wish to God that I would have known for sure she was dying & did things differently to make her more comfortable in the end. The guilt I feel now for pushing her to get better is something I can't hardly live with.

      Delete
  8. THANK YOU for succinctly defining and describing this final stage in life's journey. Too often we are in denial and refuse to accept that this is normal. The financial and emotional cost of fighting it has taken a huge toll on people and our healthcare system. Thousands of dollars spent/wasted to hold off the inevitable. The cost can never be measured with the economic and psychological carnage we leave behind trying to "save" our loved ones from death. I just buried a parent, and it wasn't nearly as bad as the 3 years leading up to this. Between my other parent refusing to let go and "fighting for their spouse" and doctors refusing to admit they couldn't help was far worse than letting go. Once you make that decision, everything else is so much easier. The roller coaster ride is not worth it. Again, thanks.

    ReplyDelete