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Wednesday, October 22, 2008

Kenneth 1915-2008

My grandfather spent about one week in the ICU. After a few days, they placed a tracheostomy and a feeding tube, in hopes that he would be able to communicate better and would be more comfortable. It was very difficult to tell if he was mentally intact or not, but he was answering questions appropriately and asking some of his own, mainly about my grandmother and asking to be shaved. However, despite being completely paralyzed from the neck down and remaining in bed on a ventilator for many days, with a cervical collar on, he appeared comfortable until Saturday.

I think on Saturday we realized that two things were happening: one, his memory was fading and his mental status was decreasing, and he was beginning to become uncomfortable with the immobility and being on a ventilator. At the same time, perhaps paradoxically, he was starting to realize that he wasn't going to get better or go home. For my grandfather, who was born in the house that he lived in his entire life, and who farmed the same land--with one arm--that entire time, this was unacceptable. The staff were beginning to talk about placing him in a nursing home. After all, his heart was starting to become irritable, but he was showing no signs of dying imminently. The only nursing home that could manage a paralyzed patient on a ventilator was in Vancouver, WA, which is about an hour from the nearest family members. We all realized that this was not a viable option for him.

So Saturday night we were all thinking about the same thing: my grandfather was not able to make his own decisions reliably any more, and continuing treatment would only delay the inevitable. No one wanted to have to decide to withdraw support, though (turn off the ventilator). Sunday morning, the neurosurgeon had a talk with my grandfather, and he told her that he wanted the ventilator turned off.

We all gathered at the hospital--his 3 kids, 4 of his 8 grandchildren, and all the spouses, plus a great-grandson. My grandmother couldn't be there, as she was still pretty ill and at another hospital. We met with the neurosurgeon and the trauma surgeon and went over what he had said and what the situation looked like for Grandpa. They told us how withdrawal of support would occur--he would be medicated with enough morphine that he was asleep, and then the ventilator would be disconnected from the trach. Everyone was comfortable enough with this to proceed.

As an ICU RN, I have withdrawn support on more patients than I can count. It is surprisingly frequent that we reach a point in our advanced medical treatment that continuing treatment only prolongs the inevitable. I have come to see this as a loving choice that families can make to end their loved ones' suffering, without actually causing death. (It is very different from euthanasia, although both are aimed at ending the suffering. Withdrawing support just means that the artificial interventions, or "life support", that are the only way the patient is not dying a natural death, are removed. This is called "comfort care" sometimes because medications are used to help the patient be as comfortable as possible.) I've always considered it a great honor to be present at this time in a patient's life. As a family member, I was actually prepared for this step when I first learned the nature of my grandfather's injury. I knew that 92 year old men do not live long as C1 quadriplegics, even with the most advanced treatment available. I also knew that his advance directive stated he did not want to be maintained on life support.

What happened next was really beautiful. We all gathered in his room by his bed, and one by one we told him that we loved him and that the family would be okay. He got to talk to us a bit as well, although it was hard to read his lips and he couldn't really "talk" with the trach. Then he got some IV morphine, and went to sleep. The ventilator was taken off, and he took some very tiny breaths, but couldn't do much because of how high his spinal cord injury was. I stroked his forehead as he had fewer breaths and turned a little dusky. Within 4 minutes he was gone.

My grandfather was a great man. He was well known and loved in his community. He lived his whole life in a farming town with a population of about 60. He lost his left arm in a farming accident when he was 18, but you never met a harder working man, and no one who knew him ever thought of him as handicapped by his injury. With little exception, he didn't sit still for long, which was why at 92 he still only looked about 70. He raised 3 kids and helped raise most of his grandkids as well. He had 9 great-grandchildren, and lived to become a great-great-grandfather, as well. He loved little kids, who were invariably fascinated by his hook instead of a hand. He had a special weakness for his granddaughters and great-granddaughters, and this would exasperate my grandmother at times. But he taught us all the value of honesty and hard work.

My grandmother won't be able to make his funeral this weekend. She is too weakend by her severe, end-stage heart disease and her injuries from the accident. She was just discharged yesterday to a home where she will be on hospice; she couldn't return to their home, either, because she can't go up any steps without severe chest pain, and needs assistance to even get to the restroom. We don't know how much longer we will have her with us, so I'm trying to see her as much as I can.

I came back to school yesterday, but it's hard for me to concentrate or get back into the swing of things. I have a lot of studying to do, but don't seem to be able to stay on task for very long. I did get a nice 5 mile run in today; running has been sporadic these past 2 weeks. And I am so sick of fast food, after grabbing whatever I can get between one hospital and the other. I have gone up and down a couple pounds, but have basically stayed about where I was when this all began. But all of this will sort itself out with time, I'm sure.

At 92 and 88 years old, my grandparents were prepared for death. They had advance directives and powers of attorney, wills and trusts all drawn up, and prepaid and prearranged their funerals. It was all neatly laid out in well-labeled file folders where my aunt could easily find everything. They didn't want to live forever. And I didn't want them to, either; as much as I've seen of life and death as a nurse, I know there are worse things than dying after a long, happy, healthy life. But this is not the end that I ever wanted or envisioned for them. At that age, you should get to die in your sleep, not deal with this kind of pain and suffering. And as much as they tried to prevent us from having to make difficult decisions about them, with their advance directive, the paperwork didn't really cover this sort of situation, so we were left with shades of gray to navigate. Trying to decide the right thing to do is not easy in a situation like this--and what one family member thinks is right might not be what another one is comfortable with.

I'm just grateful for the time I was able to spend with my family, and especially with my grandparents. I'm glad I was able to help my family navigate the health care system somewhat, and understand a bit more about the injuries they sustained. Being on the other end of the trauma system--the family end, instead of the provider end--is not something I recommend for anyone. But I am grateful that both of my grandparents received excellent nursing and medical care.


She Smiles said...

I'm so sorry for your loss. You and your family are in my thoughts. *hugs*

Kristi said...

I'm so sorry to hear this. I work as a Physical Therapist in a nursing home and see death all the time but nothing prepares you for when it's one of your own. My prayers are with your family.

Diz said...

Oh Gwen, I'm so sorry about your loss, but I'm so thankful that you could navigate the health care aspects of it. I'm also thankful that you have such a great relationship with them. Thank you for sharing and I see some of your Grandfather in you, i.e. the hard working individual. My prayers are with you all.

GF said...

I am sorry for your loss -- continued thoughts and prayers!

Thinspiration said...

this was a sad post. I am so sorry. He sounded like an awesome Grandpa.