The cost of dying: lessons learned

[Marina]

The cost of dying: Lessons learned

By Lisa M. Krieger
lkrieger@mercurynews.com
Posted:   02/19/2012 05:43:47 AM PST
http://www.mercurynews.com/cost-of-dying/ci_19999864?source=rss


I'm not afraid of death. I didn't miss myself before I was born, and won't miss myself once I'm gone.
But I'm terrified of pointless suffering. I don't want to die amid tubes or catheters. I don't want my last sensation to be the cracking of ribs while medics try to restart my heart.
What's a good death? And how do we get there? Thanks to the generosity of readers, I've learned a lot about dying in the two weeks since I wrote "Cost of dying," the story about my father's final days in a hospital bed, far from the natural death he desired. So many of your letters made clear your hard-won lessons. Now, here's what I learned from you about better and more compassionate ways to leave this life.

Lesson 1:
Family members and doctors tell of hard decisions about dying patients
Much earlier, we need to think -- long and hard -- about end-of-life care.
"I was not prepared," said Ray Brown of Pittsburg, who cared for his 84-year-old mother, Alice, and brother Robert, 54, before their deaths. "Even if your loved one comes out of something horrible, don't lull yourself into thinking that you will have them around forever. Make sure you talk to them about what they would like you to do the next time.
"A love is so strong that it can cloud your thinking."
For me, planning should have begun the day my dad got his Alzheimer's diagnosis, four years before his death. Certainly when he broke his hip. By the time we got to the ER, trying to combat an infection in my frail 88-year-old dad, it was far too late.
One reader described the festive birthday of a senior friend -- who celebrated by giving an Advanced Directive form to each guest.

Lesson 2:
 We need more information, quickly, about our options.
ER is hell. And the doctors and nurses who work there are true heroes, working under unimaginable pressure.
No one wants to hear a loved one is dying. But readers said it would help to hear early on about the options for comfort care as well as aggressive care. Then, if things turn south, they would know what kind of relief is possible.
"It's important for ER personnel to reassure families that it is OK to avoid extraordinary measures in accordance with the patient's wishes," said Don Coolman, a respiratory therapist from Santa Cruz.
Doctors should lay out the path ahead, one physician advises colleagues.
"It can be helpful to have someone say: 'This is what we can do to stabilize him. This is what it might look like in 24 or 48 hours, and here is what it looks like farther down,' " said Dr. Jeffrey Stoneberg of Alta Bates Summit Medical Center. "Is this something your parent would like? Or should we step back and allow a peaceful death?"

Lesson 3:
As the days go by, we need consistent guidance -- and goals.
Elizabeth Macapanpan, of San Jose, made that point clear. "Different doctors and nurses would give their opinions and their assessments. ... I would be angry, confused, depressed all in one minute at times -- not knowing what was the right path for us," said Macapanpan, who cared for her mother through a heart attack, double limb amputations, several incidents with septicemia, pneumonia, then congenital heart failure and a lung tumor.
Stoneberg said it is important to look to the future, beyond the immediate crisis. Otherwise, "you keep making decisions, then all of a sudden you look around and see how far you've gone down that path, and wonder, 'How did I get here?' "
Readers wrote about loved ones who never walked again, or who never regained consciousness. If they had known the future looked so bleak, many said it would have changed their decisions.

LESSON 4:
 The intensive care unit is being used to ward off a natural end to life -- and it shouldn't be.
The percentage of Californians spending at least a week in intensive care units at the end of their lives almost doubled from 1996 to 2007, from 12.5 percent to 20.3 percent -- and is nearly a third higher than the national average, according to a new report by the California HealthCare Foundation.
"The culture about getting into ICU has changed a lot over the past 30 years," said Dr. Glen Petersen, the chairman of pharmacy and therapeutics at Alta Bates Summit Medical Center. Now we think "if we have ICU and we can turn some things around, we can use it for everybody -- including the elderly."
If you're recovering from a heart attack, doctors told me, intensive care is the best place to be. Terminal cancer? Skip it.

LESSON 5:
It's much more difficult to stop intensive treatment than to start it.
When you pull out a feeding tube, you're denying food to your loved one, they told me. When you remove a ventilator, you are letting that loved one suffocate. It's brutal; you feel like an accomplice to their death.
The most important decision is whether to start those intensive treatments at all.
When Graeme Plant, of Napa, developed pneumonia, on top of an Alzheimer's diagnosis, his family resisted painful treatment and "elected to take him home, knowing that he would die peacefully there," said son Malcolm.
Antibiotics may not seem like a big deal, but they are considered "treatment," doctors say. So are ventilators and feeding tubes. Look at each of these as an opportunity to say no.
"Wrap me up in a blanket and hold my hand, but don't put me on that breathing machine," said Coolman, the respiratory therapist.

LESSON 6:
 Hospice or palliative care isn't "quitting."
It offers help that aggressive treatment can't, such as pain relief, anxiety control and peace, many readers and health care professionals told me. Hospice, supportive care for the dying in a homelike setting, is a gift, said some, because it lets relatives shift their energy from chasing tests and treatments to what's really important: telling someone you love them and will always remember them.
"I can't tell you the many times people have said, 'I wish I knew about Hospice sooner,' " said Chris Ciriretto, a nurse manager in the East Bay.

LESSON 7: Hospitals operate on slim margins -- and lose money on long, lingering deaths.
Hospitals usually break even on Medicare patients in ICUs, like my dad. But they lose money if someone stays a long time, because the government pays a set amount, per diagnosis -- whether the patient needs two or 20 days of care.
They lose a lot of money on state Medi-Cal patients, said San Jose urologist Terry Sullivan. They make their money on privately insured patients.
"The operating margins of hospitals are not large -- 2 to 3 percent," said Dr. Norman Rizk of Stanford Hospital.

LESSON 8:
 Don't abandon us. We feel like failures when doctors disappear.
"The greatest gift medical people could bestow would be to step away from the patient, but not the family," said Sheryl Gordon, of Martinez, who nursed her husband through his final four months. She has made sure she will spend her own final days in hospice care.
Wrote Leah Eskenazi of San Francisco's Family Caregiver Alliance: "The worst parts of having my parents die in the hospital was after each death ... the void of support and condolence by those working in the hospital environment was deafening."

LESSON 9:
 Even with all the planning in the world, it's still awful.
All that Dad ever asked is that I do the best I could. I think he would have accepted my mistakes. He would have been proud to know that what I learned will ease my own passing, and now I can turn my memories to all the good times. He would be thrilled to think that he may have helped others.
In his honor, and with deep gratitude for all your support and wisdom, let's carry on this conversation to ease the burdens that you have shown we don't have to bear.

[willowtreewren]

Thanks for sharing this, Marina.

My 88 year old dad has shared with me all his advanced directives. And I have passed on to my own daughter my wishes for end of life decisions (hoping that the time is still far in the future).

One thing that we learned when going through all the work for developing a comprehensive outline of what we wanted, was that it is most difficult for young people to contemplate end of life directives. But death does not always conveniently wait until old age. Parents often must struggle with not knowing what their children wanted....

It is NEVER too early to be thinking of how you want to die. And taking steps to assure that it will go your way.

Aleta

[jbeany]

Get an Advanced Directive/Medical Power of Attorney signed NOW!  If you haven't got a legal document signed, naming someone to make those decisions for you when you can't, then the docs MUST legally go to extremes until your loved ones get the court to grant them power.  And heaven help you if your family doesn't agree on treatment!
One of the lawyers I volunteer with tells a client horror story of 5 siblings trying to decide what to do with their semi-comatose stroke-victim mother.  2 said plug, 2 said unplug, and the 5th couldn't bring herself to make a decision.  They ended up fighting it out in court for months, until their mother's massive fatal heart attack ended the fight. Would you have wanted to be the one rendered immobile and vaguely aware only of pain and suffering for 6 months because your kids couldn't agree?

[Grumpy-1]

The story of my dad.   Dad come to live with us at the age of 87.  He was in what we thought was good health for his age.  He could get around, drive himself to place he wanted to go. (didn't go too far as he was afraid to get lost - not a hard thing to do in a strange town).  So we enjoyed him living with us.  Dad was feeling a bit poorly and it was time for a regular Dr appointment.  After a few tests and stuff, the Dr callled us and ask if we could come in to his office to talk.  At that point I knew is wasn't going to be good.  So with Dad and I sitting in the Dr office we were told that Dad had colon cancer (a fast spreading type) and gave us two options.  One was to fight the cancer with drugs and radiation the other do nothing.  My question on the first option was something like "after all the drugs and stuff what will be his quality of life?"  The answer was "not much".   Dad would most likely have to stay at home, unable to get out unassisted, need help moving from room to room and doing the normal bathroom activities.   So we asked the Dr for some time alone.  It took Dad and I only a few minutes to decide that after 87 years of a good life, he was ready to let nature take it's course.   So the only thing we ask of the Dr was to give us a prescription for pain bills so Dad wouldn't be in too much pain.

We went home and told the family.  While everyone was sad - all understood and respected Dad's wishes.  The next day we call about Hospice and made an appointment for them to come in the following week.  However, the cancer was quicker and Dad passed away the evening before the appointment.  I remember that evening, I went into his room and he was laying in bed reading something.  I told him I Loved him and he told me he loved me too.  That was the last words spoken.  Sometime in the night he passed away peacefully in his sleep.

While it was hard not to put him in the hospital and go through all the stuff to fight it.  It was the right thing to do. 

For me - I told my family that I didn't want to hook to machines to keep me alive.  I want to die like Dad - in my bed in my home with my family around.  Not a hospital bed with nurses watching my monitors.   However is seems a bit ironic that every night I hook myself to the PD cycler and it helps keep me alive.

Grumpy