Wednesday, December 9, 2009

End of Life Care Decisions: More Gray Than Black and White


Months ago, I shared a personal situation with our readers which faces millions of Americans everyday and certainly billions around the world -- caring for an elderly loved one.  Some years ago, my grandmother was completing a health care proxy and decided to list me as the primary person to make health care decisions should she be unable to speak for herself.  She was afraid that if given the opportunity, other family members would keep her hooked up to machines indefinitely though there was no chance of recovery.  My husband and I also filled out health care proxies many years ago, and at the time, my understanding of the proxy was rather black and white.  I thought only of a situation where I was hooked up to a respirator with no brain activity or another similar grave condition.  Being a  health care proxy in New York state, and likely other states as well, is much more than that.  Since my grandmother became a resident in the local nursing home, the shades of gray in my responsibility have brought more questions than answers. 

My grandmother has had six difficult months since her admission including severe anxiety attacks, falls from trying to get up in the night though she cannot walk, skin tears, hospitalization for iron deficiency and dehydration, occasional dips in oxygen levels, constant confusion which places her in a dream-like state within a bubble of reality and a perceived loneliness though family visits her every day.  As her health care proxy, I receive a call for everything.  My aunt has her power of attorney yet neither she nor her three sisters have a say about health care matters.  I find myself on-edge every time the phone rings in the evening, or God forbid, the middle of the night.  It is my honor to see to the physical well-being of my dear grandmother, a woman who was really more like a mother to me.  It is also much more stressful than I could have ever imagined.

After her hospital stay, Grandma's doctor contacted me and asked me to see the social worker at the nursing home.  He wanted me to sign an advanced care directive - a document which breaks down every aspect of a person's care and check the appropriate boxes  - yes or no.  It was decision time and my grandmother was not receiving any extraordinary medical support.  There were no intravenous fluids, no respirator -- no machines I thought about when I heard the words health care proxy.  The decisions required of me in those moments standing at the nurses station (all while my grandmother was being comforted by someone because she was crying uncontrollably about a situation which did not exist in reality) were gut-wrenching.  How far would we go to treat any future health problems?  Would she have x-rays?  Would she have blood work?  Would we give her intravenous fluids?  Would we give her artificial nutrition?  Would we hospitalize her?  Would she have surgery?  Would she be given antibiotics if her medical condition required them to get better?

As a family, we agreed to keep her comfortable.  We also agreed not to put her through tests which would cause great stress - CT scans, MRIs and the like.  The Church instructions about hydration and nutrition are spelled out for people in a vegetative state or facing imminent death, but what about someone who is in fairly good health considering her advanced age and vascular dementia?  She does not remember to ask for a drink, though at times she is thirsty.  She also thinks that since there is a top on her cup they offer her that the drink is not water but some sort of gel.  She will tap at the top of her cup and say, "See.  This is awful.  It's some sort of gel they put in there."  Yes, she can speak that clearly.  Do we force her to drink in order that she stay hydrated?  We offer her soda, juice, milkshakes, etc. and someone brings her treats nearly every day. My aunt even bought her water bottles and the nursing home made a space in their refrigerator so that she can have her own bottles of water.    We prompt her to eat, and the food they serve is quite good, but her appetite is 1/4 of what it was just months ago.  She thinks they serve the same food everyday, though their menu is clearly varied. 

The doctor has indicated that her health is slowly winding down.  Her kidney function has been low for about a year now.  With her spotty eating habits, her iron level is likely to diminish once again.  I pray every day for her - and for me - that I make decisions in regard to her care that reflect God's will.  Making this even more difficult is the fact that only one of her four daughters has any faith at all.

While studying Church teaching and placing that guideline alongside the situation my grandmother currently faces, I find there are no clear answers.  One must extrapolate which statements apply to a personal situation and hope the Holy Spirit speaks in the heart when time for the next decision comes.  Fluids and nutrition, even artificial nutrition, are to be used if the person is to live indefinitely.  If the fluid and nutrition causes stress on organs or systems of a dying person, they may be discontinued.  If death is imminent, hydration and nutrition can be stopped if it will not hasten death.  What constitutes dying?   Who decides if the hydration and nutrition measures cause stress or not?  Dealing with nurses, social workers and doctors who are secularized makes it very difficult to know whose best interest they have in mind.  I did the best I could in making choices on the document I filled out.  I was assured by the social worker that this only is to serve as a guide to the floor nurses and is not 'written in stone'.

I feel so ill-equipped for this awesome responsibility.  Pray for me and my dear grandmother.

UPDATE:  March 2011  

In the autumn of 2010, I received a call from the nursing home at 6:30 a.m. and the nurse told me that my grandmother had fallen sometime in the night but appeared be uninjured.  At this point, she had lost nearly 70 lbs. since she was admitted and lost any cushion she had on her bottom.  They believed that she had awakened to use the bathroom and made it no further than the linoleum floor next to her bed.  Since she became a resident at the nursing home, she has never been able to understand how to use the call button and had fallen several times.  A few days later, during a visit with family members, she told them her hip hurt horribly.  They called the ambulance and had her taken to the emergency room for x-rays and sure enough, her hip was broken.  I raced to the emergency room and found her to be terribly anxious and she kept trying to roll onto the broken hip instead of away from it.  They had given her something for the pain and we had to wait for the surgeon to come and discuss with us the options - more difficult decisions needed to be made.  He indicated two options:  she could have surgery or go back to the nursing home that night.  He said that the pain would be the same in intensity and duration with or without the surgery.  She never was going to walk again with either option and up to this point could only walk with two-person assist and her walker for a very short distance.  She had become as comfortable as she could possibly be with her surroundings at the nursing home and had grown attached to some of the aids and nurses.  We knew what surgery would mean for her - extreme stress of being moved to yet another environment surrounded by strangers, frightening sounds and discomfort and the possibility of complications due to the surgery.  We took her back to the nursing home, praying and hoping that we made the best decision for her.

After a couple of weeks passed, she no longer complained about hip pain and started trying to squirm out of her chair and get up.  No form of restraint is legal in the state of New York - even if it means a patient or nursing home resident falls onto the floor.  The best they can do is to place soft mats on the floor around the person. She continues to struggle with extreme anxiety which is unpredictable and washes over her in waves. We were concerned a few months back about the need to change medication so that she wasn't so tortured with delusions.  She can all at the same time know who you are, understand where she is, yet think that someone she loves has died or was kidnapped.  A meeting was arranged with the Psychologist, Physician and team that helps to care for her so that the family could share concerns and ask questions.  The Psychologist told the Physician that the meds he had prescribed were an outdated means to treat the elderly and that something else would most likely work better.  He also noted that they had listed in her paperwork that we wanted her to receive only comfort care.  Well, comfort care means something quite specific to those in the medical field and something quite vague to most lay persons.  Comfort care, at least in our state, means no treatment of any chronic problem.  No blood pressure medication, no thyroid medication, no anything except for what gives comfort to the patient, ie: tylenol, lip balm on sore lips, etc.  This had not been our wishes at all!  The Psychologist was shocked that she was still receiving the meds that she was with 'comfort care' marked in her binder.  We wanted her comfortable, but to us, that meant to keep her alive as well!  We did not want to hasten her death by withholding something that was simple to administer and was by no means extraordinary.  Soooo... we amended the orders to clearly indicate our intentions for her care.

While visiting with her two days ago, she told me she just feels like mud.  I told her that sometimes we all feel like mud and that's okay.  God made the mud, too, and if it is good enough for Him...

We continue to suffer watching her suffer this living purgatory and enjoy brief glimpses of when she is fairly coherent, funny and reminiscing about times long since past.

UPDATE: October 2011 - New Post HERE

Will to Live - Everyone should have one!


Renee said...

Kelly, I sympathize with you as I recently went through the same with my dad. Your post is beautiful and I keep you and your Grandmother in my prayers.

Ann said...

We went through this with both my grandfather and my step-dad's father. It is the shades of grey that are difficult to figure out and how do you choose whether they live or die. Dr.'s will rarely say there is no hope as that may lead to lawsuits. They are medically bound to try anything and everything. We finally went with the decision of QUALITY of LIFE and pain and suffering as the best answer to lead the decisions to be made.