Expectant Parents at the Brooklyn Botanical Garden
Expectant Great-Grandmother Up & About
The Caregiving Angel Who Makes Lemonade from Lemons
"You've Got To Give Them Hope"
-Harvey Milk-
-Harvey Milk-
"Most importantly, no patient should ever leave a visit with a physician without a sense of hope."
-JAMA Dec. 2008, Drs. Catherine DeAngelis & James Harris-
I've just returned from 10 days split between New York & Florida--from visiting my son & daughter-in-law who are expecting at the end of May--to visiting my mother-in-law who was recently told by a doctor, "There's nothing we can do for you--Go home & be comfortable--Give hospice a call."
The Power of Hopelessness
When we arrived in Florida my mother-in-law was back at home, confined to a hospital bed in her bedroom. She wanted the room dark. No TV, no radio. She just wanted to stay in her bed.
She wanted time to pass quickly. She wanted out--and she wanted "out" fast. She had no real pain, but the first hospice nurse on the scene was only too happy to administer narcotics. Notice I said, "first hospice nurse". She was dismissed.
Cloistered in that dark bedroom, my mother-in-law was certain she was incapable of feeding herself, of getting out of bed, of moving.
Before being discharged from the hospital, the few words of hopelessness the doctor had offered to her after her 9 day stay were delivered directly to her--without the presence of family. She had been overly-sedated, never moved from her bed. She was without her glasses or her hearing aids. She wasn't even quite sure why she was in the hospital, it had all happened so fast.
Just matter-of-factly, the doctor said, "We found cancer cells in the fluid we removed from around your lungs. There is nothing we can do for you. Go home and be comfortable. Call hospice. Do you have any questions?" No further explanation and he was quickly out the door.
*Just to be clear: My sister-in-law or a caregiving friend were with my mother-in-law around the clock in the hospital. The hospital insisted on the sedation. They carelessly delayed the tests on her fluid. The doctors were uncommunicative, dismissive & offered little information. My sister-in-law made sure she was at 7:00 am or 6:00 pm hospital rounds in order to speak to the doctors--no matter what. On the day the "news" was delivered to my mother-in-law, the doctor had arrived at 6:45 am.
What did we know? Cancer cells were found in the fluid surrounding the lungs? What's that supposed to mean? Not a real surprise. She was having chemo & radiation, after all. And who's to say exactly how much time anyone still has left, anyway? So many unanswered questions and we had lost all confidence in the ability of these small-town Florida doctors to provide us with real answers.
Once she was home a call to her local oncology group for further clarification and explanation of the situation was dismissed with, "You're with hospice now. We're no longer your doctors."
She had come into the hospital walking. Three weeks before she finally had her normal life back--she'd recovered from cancer surgery--she had gone to a concert, out-to-eat, she was back to seeing her friends. After 9 days in the hospital, confined to bed with a chest tube and heavy sedation she left basically bedridden.
And unbeknownst to us--once hospice is on the case, Medicare considers it "double-dipping" to get any physical or occupational therapy assistance to undo the immobility damage caused be a hospital stay that keeps you too sedated & weak to walk or feed yourself.
The family is "on their own" to get their loved one back in condition to feed themselves, to get out of bed, to use a commode or to figure out the maneuvers it takes to get into a wheelchair and transfer to a comfortable chair.
But if you're confined to a bed because of a long hospital stay (that leaves you deconditioned), left with a message to go home and wait for death--and then given no medical support to at least give you a fighting chance to "get you back on your feet" so you can have some kind of quality of life for the rest of your days--what does that say about our "too-busy-to-talk-&-explain" doctors & Medicare's "fear of double-dipping"?
It's all black and white. No middle ground. If you decide against curative medical care, and you want to stay in your own home with some home care support & medical equipment you're forced to choose hospice. But if you choose hospice you lose the support of physical & occupational therapy that will give you a better quality of life. It's a Catch-22.
In the words of Catherine D. De Angelis, the editor of JAMA, and her husband, James C. Harris in their recent editorial, "The Power of Hope":
She wanted time to pass quickly. She wanted out--and she wanted "out" fast. She had no real pain, but the first hospice nurse on the scene was only too happy to administer narcotics. Notice I said, "first hospice nurse". She was dismissed.
Cloistered in that dark bedroom, my mother-in-law was certain she was incapable of feeding herself, of getting out of bed, of moving.
Before being discharged from the hospital, the few words of hopelessness the doctor had offered to her after her 9 day stay were delivered directly to her--without the presence of family. She had been overly-sedated, never moved from her bed. She was without her glasses or her hearing aids. She wasn't even quite sure why she was in the hospital, it had all happened so fast.
Just matter-of-factly, the doctor said, "We found cancer cells in the fluid we removed from around your lungs. There is nothing we can do for you. Go home and be comfortable. Call hospice. Do you have any questions?" No further explanation and he was quickly out the door.
*Just to be clear: My sister-in-law or a caregiving friend were with my mother-in-law around the clock in the hospital. The hospital insisted on the sedation. They carelessly delayed the tests on her fluid. The doctors were uncommunicative, dismissive & offered little information. My sister-in-law made sure she was at 7:00 am or 6:00 pm hospital rounds in order to speak to the doctors--no matter what. On the day the "news" was delivered to my mother-in-law, the doctor had arrived at 6:45 am.
What did we know? Cancer cells were found in the fluid surrounding the lungs? What's that supposed to mean? Not a real surprise. She was having chemo & radiation, after all. And who's to say exactly how much time anyone still has left, anyway? So many unanswered questions and we had lost all confidence in the ability of these small-town Florida doctors to provide us with real answers.
Once she was home a call to her local oncology group for further clarification and explanation of the situation was dismissed with, "You're with hospice now. We're no longer your doctors."
She had come into the hospital walking. Three weeks before she finally had her normal life back--she'd recovered from cancer surgery--she had gone to a concert, out-to-eat, she was back to seeing her friends. After 9 days in the hospital, confined to bed with a chest tube and heavy sedation she left basically bedridden.
And unbeknownst to us--once hospice is on the case, Medicare considers it "double-dipping" to get any physical or occupational therapy assistance to undo the immobility damage caused be a hospital stay that keeps you too sedated & weak to walk or feed yourself.
The family is "on their own" to get their loved one back in condition to feed themselves, to get out of bed, to use a commode or to figure out the maneuvers it takes to get into a wheelchair and transfer to a comfortable chair.
But if you're confined to a bed because of a long hospital stay (that leaves you deconditioned), left with a message to go home and wait for death--and then given no medical support to at least give you a fighting chance to "get you back on your feet" so you can have some kind of quality of life for the rest of your days--what does that say about our "too-busy-to-talk-&-explain" doctors & Medicare's "fear of double-dipping"?
It's all black and white. No middle ground. If you decide against curative medical care, and you want to stay in your own home with some home care support & medical equipment you're forced to choose hospice. But if you choose hospice you lose the support of physical & occupational therapy that will give you a better quality of life. It's a Catch-22.
In the words of Catherine D. De Angelis, the editor of JAMA, and her husband, James C. Harris in their recent editorial, "The Power of Hope":
"Anxiety is distracting to a patient and makes it difficult for him or her to listen to what a physician has said or is saying. Worse still is despair, when a patient gives up hope completely and shuts down emotionally. How can a physician reassure a patient who is so distressed and ensure that the patient leaves with the expectation that something can be done and is hopeful about his or her condition?"
*
"Hope begins with sincere emotional engagement with a physician who
addresses the patient's fears. The human nervous system has evolved to
allow for hope. With hope, sleep is restorative, easing daytime fears
as emotion is modulated while dreaming, allowing for waking more
refreshed and alert to the challenges of a new day."
*
"That sense of comfort helps explain why the effect of one person on
another is so potent. It also may account for elements of the placebo
effect, a real physiologic response linked to reward centers in the
brain, immune functioning, and possibly to the release of restorative
hormones such as oxytocin. The psychological experience is that of
hopefulness achieved by the balancing of mistrust and trust."The Power of Hope
You don't always need a doctor or a nurse to tell you what to do. No one can take away your own common sense. No one cares more about your loved one than you. And no one else knows knows or understands your loved one better than you.
We aren't after a miracle cure. We are realistic. We are well aware of my mother-in-law's age and stamina. We are after quality of life. We are after hope. As long as my mother-in-law is capable of making baby-steps to gain more mobility we're going to forge ahead.
When the time comes that she no longer has the strength to move ahead--that will be the time to just concentrate on "comfort care".
In the meantime, by the time we left Florida, my mother-in-law was holding her own coffee cup, eating her own lox & whole wheat "bagel", getting dressed, putting on lipstick, enjoying her many visitors, basking in the Florida sunshine, supervising our cooking in her own kitchen, and even downing my husband's improvised "green smoothie". It is amazing how appreciative she was of little pleasures, like seeing her own kitchen and soaking in the sun.
Yes, she still got exhausted & needed rest. But, she'd gained so much.
It was apparent to all of us how her confidence and mood improved with each little improvement she made. The less she slept the day away, the better she slept at night. Her appetite improved, and Joe Graedon's cure for the "irregularity" that comes from immobility and medicines seems to be doing its magic.
Here's the magical recipe to end drug-induced & immobility constipation:
1 cup applesauce
1 cup flax meal
3/4 cup combo of prune juice & stewed prunes
Whip it up in a blender.
Aim for 1/4 cup a day + plenty of water.
My mother-in-law's angel caregiver added extra applesauce & some agave syrup to make it sweeter & more enticing to my mother-in-law's "discriminating-palate".
We aren't after a miracle cure. We are realistic. We are well aware of my mother-in-law's age and stamina. We are after quality of life. We are after hope. As long as my mother-in-law is capable of making baby-steps to gain more mobility we're going to forge ahead.
When the time comes that she no longer has the strength to move ahead--that will be the time to just concentrate on "comfort care".
In the meantime, by the time we left Florida, my mother-in-law was holding her own coffee cup, eating her own lox & whole wheat "bagel", getting dressed, putting on lipstick, enjoying her many visitors, basking in the Florida sunshine, supervising our cooking in her own kitchen, and even downing my husband's improvised "green smoothie". It is amazing how appreciative she was of little pleasures, like seeing her own kitchen and soaking in the sun.
Yes, she still got exhausted & needed rest. But, she'd gained so much.
It was apparent to all of us how her confidence and mood improved with each little improvement she made. The less she slept the day away, the better she slept at night. Her appetite improved, and Joe Graedon's cure for the "irregularity" that comes from immobility and medicines seems to be doing its magic.
Here's the magical recipe to end drug-induced & immobility constipation:
1 cup applesauce
1 cup flax meal
3/4 cup combo of prune juice & stewed prunes
Whip it up in a blender.
Aim for 1/4 cup a day + plenty of water.
My mother-in-law's angel caregiver added extra applesauce & some agave syrup to make it sweeter & more enticing to my mother-in-law's "discriminating-palate".
The Power of Family, Visitors & an Angel Caregiver
If there is optimism & hope in difficult times it comes from the day-in-and-day-out strength, caring & support of my sister-in-law; the gentle but insistent coaching of my husband; and my mother-in-law's unbelievable good fortune to have met a wonderful caregiver who happens to be a vegan, as well as a woman of strength, kindness & faith. She just may be one of the Lamed Vovniks (I kid you not).
It's also quite heart-warming to see how much the short daily visits from friends and family mean to my mother-in-law's spirit. And knowing that her first great-grandchild is arriving at the end of May is definitely incentive to keep-on-keeping-on.
Hope is both the earliest and the most indispensable virtue inherent in the state of being alive. If life is to be sustained hope must remain, even where confidence is wounded, trust impaired.
-Erik H. Erikson-
It's also quite heart-warming to see how much the short daily visits from friends and family mean to my mother-in-law's spirit. And knowing that her first great-grandchild is arriving at the end of May is definitely incentive to keep-on-keeping-on.
Hope is both the earliest and the most indispensable virtue inherent in the state of being alive. If life is to be sustained hope must remain, even where confidence is wounded, trust impaired.
-Erik H. Erikson-
I think there is a fine balance that doctors need to find, and your mother-in-law's obviously has not. On the other side of the spectrum are doctors who are not realistic with their patients about their mortality and don't let them know about the help that hospice can provide.
Unfortunately, the average stay in hospice prior to death is only 6 days. I say unfortunately because most families usually end the process saying, "I wish we had done that sooner!" What most of us know if it is the gory end, but it can be an incredible support for months and months prior to demise.
My idea of hope is a day when doctors can communicate to us clearly what the realistic expectations are for our length of life ahead and then discuss with us options for how to make the best of that time.
Posted by: Kairol Rosenthal | February 23, 2009 at 05:30 PM