Monday, March 15, 2010

Medicating the Dying.

After noting the false but common accusation that hospice and palliative providers receive - that they simply over-medicate patients to death - Hospice Doctor notes that sometimes, families don't buy the "morphine causes death" hype and ask for more medication. HD explains a situation recently encountered:

Not long ago, I ran into the opposite problem. Anne was in the last phases of her colon cancer, admitted to our inpatient unit and, by the assessment of every staff member, comfortable and pain-free. "Not so," said her two adult daughters, "we want her sedated even more. Our mom is a stoic. She wouldn't report pain to you. But we know she's in pain, and we want her to have more morphine." Anne was intermittently conscious, and she had blinked when the daughters asked her if she was in pain. That was their evidence. But her face and body were relaxed, and her breathing was easy -- all signs that tell hospice workers their patients are pain-free. The staff felt they were being railroaded into giving more medication than they felt was justified. A nursing supervisor recorded a conversation at four o'clock in the morning with one daughter. "Are you telling me you want euthanasia for your mother?" she asked. "Yes" was the reply.

I spent a couple of hours with the daughters over the last two or three days of their mother's life, talking in great detail about how we assessed patients and why we thought she was comfortable. I explained how we balance giving enough medication to relieve suffering while trying to avoid any hastening or acceleration of the dying process. The daughters didn't buy it. Right up to the end, when Anne was deeply unconscious and skipping breaths for 30 seconds or more, they clamored for more drugs. Our staff was convinced that Anne died peacefully, but there was no peace for those she left behind.

What motivates families to make a request like this? There are cynical explanations -- a son needs to get back to work, or there's a lot of money to be inherited. It's hard to believe that getting a will into probate faster would motivate a child to ask for euthanasia for a parent, but I suppose it's happened now and then. Or there may be an ambivalent relationship between players in the end-of-life drama. Perhaps there are unresolved issues stemming from childhood. Now that the child can, in effect, exercise parental power over his parent, it may be tempting to turn the tables once and for all. That, too, has probably happened from time to time.

But I believe the reason lies most often with the intense pain that people feel when their loved ones are dying before their eyes. Pain...and impotence, the inability to change the outcome, to protect a loved one from the finality of death. If I have no power to prevent my wife from dying, then I'll exercise my power to prevent her from feeling any pain at all. Both hospice workers and families share the goal of relieving suffering. But because we work in the fishbowl that is America's ambivalence about dying -- think of the "Obama death panel" insanity -- hospice people also must be sensitive to charges that "all you do is give them morphine and kill them." That need to balance is irrelevant to families grieving the loss of a loved one in advance of the loss itself. And therein, I think, lies the seed of the conflict we had with Anne's daughters. I know of no easy solution to the "medicate, medicate" dilemma other than to educate, educate.

Having been through this myself, I can attest to the fact that I wanted to have more and more meds for my father who was dying of non-Hodgkins Lymphoma. He was restless and agitated - and to my novice but familial eye - he was suffering. It's hard to watch our semi-unconscious loved ones struggle, to feel disoriented by their surroundings, to try to get out of bed repeatedly, and to work hard to breath. But now, as a hospice volunteer, I understand that this is a fairly common experience for the dying - and attending loved ones. But isolation from how we die had convinced me that my father was in pain. What did I know of dying? What the media told me. No one discusses what it can look like, how it can happen. It took the experience of watching other dying patients in a hospice ward to understand what distinguishes pain from disorientation from the natural process.

And yet, as most Americans continue to die in hospitals, we tend to be removed from the dying process, unfamiliar with how patients' die. It's hard to explain to someone what to expect, particularly when they are in the experience with a loved one. Emotion makes everything highly charged.

But educate we must! Until more people understand the differences between pro-longing life and pro-longing death we'll continue to see patients' in hospitals at the end of life despite their desire to die at home.

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Blogger Rick said...

Ann, I decided to re-read your last entry, especially after reading your response to my post on one of your articles.

I totally agree with you. I am 78, and have been fighting prostate cancer since the year 2000. About 2002, I went into remission.

It returned in 2004, and I told my doctor, not radiation nor quemotheraphy. I have a naturalpathic physician and also two conventional medical doctors, one my personal physician, and the other a urologist.

I was miraculous healed in 2006. But, the cancer returned nine months ago with a psa of 562. Since they are not giving me the usual treatments, they are giving me injections to lower my psa. The cancer has metastasized to my lower rib cage, sacriiliac, and right hip.

I now eat a lot of fresh fruit, steamed vegetables; I avoid soft drinks and sugar.

I intend to beat this, with love from my wife and friends, but if not, I wish to remain at home. My life expectancy from this is from 4 to 5 years if not cured, going into remission, or healed.

I apologize for taking so much time to air my personal health issues, but felt it helpful to share how I feel.

My niece died last month of liver, bone, and she was pre-leukemia. She was under the care of hospice. She was taking a lot of pain killers prior to death.

Again, I thought you posted a good article.

Overland Park, KS

March 15, 2010 at 5:59 PM  
Blogger Ann Neumann said...

Hi Rick,

First, I'm so sorry to hear about your illness and the recent sad death of your niece.

Second, I think our personal stories about illness and dying are tremendously important. I feel very strongly that the more people hear and understand the challenges faced by those with grave disease and the loss of loved ones, the better prepared we are for those traumas. So no apology is ever necessary here.

I write and talk about death all the time. And as a hospice volunteer, I've come to see the process as one that deserves and requires more exposure and discussion.

Thank you for reading and telling me what you think. It matters! And when you come across posts you don't like, I hope you'll tell me so.

Now, take care and fight it as long as possible!

My support and well-wishes to you and your family! I hope we can stay in touch.

Very best, Ann

March 15, 2010 at 6:25 PM  
Blogger Regina Holliday said...

Thank You so much for this post. We need more people who will describe the painful choices that are part of the end of life experience. We need more awareness in our society of the process of death in order for our citizens to face it with grace and dignity whether they are a patient, family member, friend or caregiver.

March 16, 2010 at 11:28 AM  
Blogger Ann Neumann said...

Thanks for coming by Regina. And (I was just at your blog) sorry for the loss of your husband. Very best with your work! Ann

March 16, 2010 at 2:13 PM  
Blogger Okakura said...

Terminal sedation might be the best approach in cases like the one you presented. That is, allow such patients the option of remaining unconscious via deep, sustained sedation and anagelsics (as needed) until death --- but without euthanization.

There are certainly ethical questions associated with this approach; notably what if such patients also (and logically) elect to forgo artificial nutrition and hydration during the process? Combined with continuous sedation, such a treatment plan could be construed as the functional equivalent of VAE. Anticipating this, I know of some hospices that have developed policies requiring a trial period of respite sedation (1-2) days to see if the patient's pain/suffering subsides and to allow them to change their mind about further (terminal) sedation if they are so inclined.

March 19, 2010 at 8:38 PM  

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