Advance Directives: A Personal Experience

My father died 13 years ago. My sister died 6 years ago. My mom died last month. Each death was different, yet hauntingly the same. Each death was filled with both regret and precious memory. In these days after my mother’s death while I’m learning how to live in the world without her in it, I am struck by the familiarity of where I now inwardly reside. I had forgotten how pervasive grief is. Once you’ve experienced it, you’re never quite the same. There’s a dimension that is added that defies explanation. Even when I integrate this new dimension in my life and slowly bring its depths into my joy, I’m nonetheless, surprised by its familiarity when it descends yet again.

The moments when each of my family members died, are still etched in my soul. Even when memories of other important or more recent events will fade, these memories will yet remain. I have no doubt about that. I will still be able to cite every graphic detail. I will be able to smile with the memories of small acts or words of kindness that others bestowed on my aching heart. I will still suffer a twinge when I recall the thoughtless words or mindless actions of those who knew not what to say or do. Kindnesses and not-so-kindnesses are magnified beyond reason when grief removes your emotional skin, exposing every raw nerve to the whims and intentions of those around you.

I was lucky. I didn’t experience my first significant grief until I was 43 years old. My father died. His death came suddenly, a day after he had a stroke. He had an Advanced Directive that spelled out what he wished, and he had also identified me as his Health Care Surrogate to make decisions for him in situations when he couldn’t speak for himself. As it turned out, neither the Advanced Directive nor the Health Care Surrogacy proved useful. This was not due to trying. We made sure the ICU staff had a copy of his Advanced Directive. When the neurologist called, I reminded him about Dad’s Advanced Directive, and we agreed that the medical plan would include treatment with medications, but nothing beyond that since it was likely that his stroke had caused widespread damage. I explained that Dad was prepared for his death and that he had talked openly about its approach in the past several months, even though none of us knew it was coming.

The next night, Dad seemed a little better; he had even regained a little movement in his leg. I decided it was safe for us to go home to get a night’s sleep. The next morning, I called the hospital to get a condition report. Imagine my surprise when I identified myself as his daughter and the nurse said, “We’ve been trying to reach you but your line has been busy. We needed to know whether or not we should code your father.”

I felt like I had been sucker punched. This is not an easy way to hear that your father is dying. And as if that weren’t enough, I was now forced into the position of having to advocate for him at a time when I could barely breathe. “No. Don’t code him,” I responded with as much breath as I could muster. The next two questions added more unnecessary blows. “Is your mother there?” I acknowledged that she was. “Is she in agreement?” I could hardly believe what I was hearing. It was more than I could bear, and I surprised myself with the force in which I yelled back my own question and answers. “Don’t you get it? It doesn’t matter what my mother wants. It doesn’t matter what I want. All that matters is what my father wants, and he doesn’t want it. Look at his Advanced Directive.”  I slammed the phone down. Running down the stairs to get my mother and brother so we could speed to the hospital, I wailed to my father, “Daddy. It’s okay to go. You don’t have to wait for us. If you need to go, go ahead. Do it. We’ll be okay.” (He must have heard me because he died before we got to the hospital.)

My brother and mother in tow, we sped to my sister’s house to pick her up. We found her on the phone with my other sister. This solved the mystery of the nurse trying to get me but “the line was busy.” They had been calling the wrong daughter! They were trying to contact the daughter who was not the health care surrogate. Thank goodness her line was busy. My sister later told me, “If they would’ve gotten through to me, I wouldn’t have been able to tell them not to revive him. Thank goodness you called them.”

In the intervening 13 years, I’ve come to realize that this scenario is not unusual. We don’t respect death so we have a hard time accepting it. Our fear of death has now become an integral part of healthcare systems that vainly fight to defeat it. Technology and legal fears are squeezing the sacredness out of death.

My sister’s death was different. Unlike Dad, her death was expected. Ann had an aggressive cancer and was given a grim prognosis from the start. It was a much harder grief to bear because she was only 40 years old and had two teenage children.

Chemotherapy was Ann’s only option. I went with her to her doctor and chemotherapy appointments. No one ever asked her about an Advanced Directive. Instead, they reviewed chemo options and when those options failed, they reviewed more chemo options.

After just a few short months, it was clear that Ann was failing treatment. I suggested hospice. She wouldn’t hear of it: “I can’t. I’ve got kids to raise.”

Weeks went by, and Ann was getting weaker. I spoke with her nurse and doctor about letting go of chemo so that she wouldn’t be so sick and could do a few things with her kids. The doctor said it was a good idea because the chemo wasn’t working. Nevertheless, neither of them talked to her about it. Ann continued getting chemo until a few days before she died. The little bit of energy she had left had been consumed with trying to get into the car to go for treatment, the wheelchair to get in the doctor’s office, the chair for the chemo, the car to go home, and bed when she got home. Each of these acts, as small as they may seem when we’re healthy, were major ordeals.

Whenever I’d talk to her about dying, she’d tell me that the doctor told her that there was always something more they could try. I felt helpless. I knew the impact that missed conversations would have on her teenage children.

Ann had an awful death – a death filled with emotional and mental suffering. I can’t help but wonder how differently it might have been if a doctor would have gently and kindly told her “No. No more.” I can’t help but think that she would have then been able to open up to the reality of what was happening. What a difference it would have made for her 14 year old daughter and 16 year old son to have some words or a letter from their mom telling them how special they were, how much she loved them, and her hopes and dreams for their futures.

I don’t really know why the doctor and nurses couldn’t do this. “The customer is always right” seems like a sound philosophy to use with patients like my sister who don’t want to accept the reality of death. To feed the fear of death with more chemo when the patient is asking for more to be done is a temptation that most of us would find hard to resist, myself included. Moreover, it’s hard to look someone so young in the eyes and tell them that death is near. Nevertheless, I have to ask myself, “Shouldn’t the doctor and nurse learn how to suffer their discomfort and open up to death? Is it fair that their fear causes people like my sister to suffer the effects of a neglected and ill-prepared-for death?”

I also think about something that a friend, an oncology nurse, told me. She said she had to leave oncology nursing because she saw too much chemo being given when it was futile. “It’s all about money,” she had told me. “It’s how the office pays its bills.” I don’t know. I prefer to think that this was not my sister’s case. Nonetheless, getting the bills paid is a reality that all of us have to face.

My mother’s death was different yet. For the last two years of her life, I moved her into an Adult Living Facility (ALF) near my home. I made sure I gave the nurse her Advanced Directive upon admission. I didn’t want the burdens of what happened with my father and sister to recur. A few months later, in a chance conversation with a nurse, I learned that another resident had died with the rescue squad at his side.

“I hope you won’t do that with Mom,” I said. “You know she has an Advanced Directive stating she doesn’t want that.”
“Does she have the yellow DNR (Do Not Resuscitate) form on her door?” the nurse asked.
“No. How do I get the ‘yellow form’?”
I got the form, mailed it to her doctor, and a week later it was posted on my mother’s door. Though I’m grateful I found out about “yellow forms,” I can’t help but wonder why it was my responsibility rather than the ALF’s responsibility to figure that out. (I subsequently had to suppress the urge to knock on every resident’s door informing them of the availability of “yellow forms” if they needed them.)

Mom’s death was peaceful; I might even describe it as beautiful. I had moved her to my home eight days before she died; hospice provided me with all the materials and support. My children and grandchildren helped provide the care – 4 generations under one roof, the latter three caring for the first. It was probably much like it was in the days before deaths occurred in hospitals and nursing homes – days when death was natural, and one generation learned how to die from helping the previous generation do it.

Unlike the first two deaths, there is nothing I would change about my mother’s death. It was the events of the days before I brought her to my home that I would change. Otherwise, her life would have had a very different ending.

The ALF staff took good care of Mom. She was bathed twice a week, had numerous activities to choose from, and ate good food in a beautiful dining room. She seldom complained about the many ills she had but rather focused on the gratitude she felt for her many blessings. Over the last six months of her life, I noted that she was sleeping more, losing interest in participating in activities, eating poorly, incontinent, and losing weight. She was treated for depression with no change; I surmised that she probably had a cancer, which later turned out to be the case. The ALF staff had a different idea. They called her doctor and got an order for physical therapy.
“I don’t want to go,” Mom told me.
“It’s your life Mom. If you don’t want to go, tell them ‘no’.”
Mom worried about staff getting mad at her if she didn’t go and so she went.

One day, I entered Mom’s room unbeknownst to her or the Physical Therapist. I stood at the doorway witnessing their conversation.
“I’m too tired to go,” Mom complained to him.

“You’re not going to get stronger if you don’t get out of that bed,” the therapist said nicely.

“But I don’t care if I get stronger. I just want to sleep,” Mom argued.

“You can sleep after you do your exercises,” he countered.
I intervened to protect my mother’s interests. “It’s okay,” I told the therapist. “Mom is nearing the end of her life. She doesn’t need therapy. If she wants to sleep, let her sleep. We’re in a mode now of just respecting what she wants.” Then I turned to Mom, “Mom, you don’t have to do anything that you don’t want to do.”
“I keep telling them that, but they don’t listen,” she said.

Her therapy didn’t stop until I called Medicare myself and told them not to pay for it.

I don’t want to imply that the staff were insensitive or incompetent. Their intentions were good. They typify the current geriatric culture with its exclusive focus on rehab and activities. Every staff member is schooled in Erik Erikson’s developmental theory, yet these principles are usually ignored. Erikson says that the developmental task of the elderly is “ego-integrity versus despair.” People who successfully reckon with their mortality, review their lives, and come to peace with their achievements and short-comings will attain inner harmony and wisdom; those unable to do this, experience despair.

It seems odd that helping people confront death and reckon with its unseemly ramifications is almost universally excluded within geriatric communities such as nursing homes. Rather than having programs that help people reckon with their approaching death, the focus is on distracting them from death with activities, pretending that death isn’t happening.

I always enjoyed sitting on the front porch in the rocking chairs with the residents. It was also a good source of information.

“You remember Florence?” Mom asked me. Yes, I had spoken with her many times in the hallways and dining room. “She went to the hospital and never came back. I asked what happened to her and the nurse said they’re not allowed to talk to us about other patients. We didn’t find out that she died until we saw her obituary in the paper.”

I could only sigh with my mother at the disrespect that she felt.

Another resident sitting nearby chimed in: “When you die, there’s no public acknowledgment,” he said matter-of-factly. “We’ve been living together and helping each other for years, and one of us dies, and everything goes on as if nothing happened.”

Even the deterioration of aging is squelched. One resident told me how anytime they try to talk about how bad they feel or how hard it is to get through the day, that the staff try to cheer them up and talk them out of their difficulties. “They don’t want to hear us complain.”

I’m thankful that Mom and I had many talks about her death on that porch. She told me about a few things she wanted to do before she died, and we were able to accomplish those. We planned her funeral and I reassured her that her body would be flown back to Indiana and buried with my father. However, even these meaningful conversations were discouraged. Overhearing us, a nurse said, “Don’t be talking like that. You’re going to live another 10 years.”
“Oh, I hope not!” Mom laughed. “Ninety years is long enough!”

When I visited Mom one weekend, I found her on the floor. The nurse said she had fallen three times that day. “We need to get some labs to find out what’s going on,” the nurse said to me.
“No. We don’t need labs. We need to get hospice. She’s dying,” I responded.

The nurse looked surprised, but she said she’d let the Charge Nurse know when she came in on Monday.

Monday came and I had a business trip a few hours away, so I phoned Mom instead of visiting. Her voice caused me alarm. I phoned Lorraine, a nurse friend who lived near Mom, to evaluate her. Lorraine phoned me from Mom’s bedside.

“She’s really bad Deborah. She’s weak and groggy. I think she’s dying,” Lorraine told me. But it was Lorraine’s next words that caused me anguish. “I told the nurse that your mom couldn’t come down to breakfast and the nurse told the aide to put her in a wheelchair and bring her down anyway. I tried to tell them she needs Hospice but they won’t believe me.”

An hour later, I phoned Lorraine for an update. The picture was only getting worse. “She can’t get up to the bathroom so I asked them for a bedside commode. They said they don’t have one.” Mom had been losing blood in her urine from what turned out to be a bladder cancer. She was probably anemic.

“She just needs a blood transfusion,” the nurse told Lorraine.

“No. She needs hospice. She’s DNR,” Lorraine countered.

     “Do Not Resuscitate just means we won’t resuscitate her heart when it stops. It doesn’t mean that we’re not going to treat her,” the nurse told her.

Lorraine told her that Mom didn’t want treatment and neither did her Health Care Surrogate. The nurse wasn’t listening.
“I can’t leave her Deborah. I can’t trust them,” Lorraine told me with the next phone call. “They’ll end up sending her to a hospital and doing things she doesn’t want done.”

I cancelled my next two days of meetings and drove home. On the way, I phoned Mom’s doctor myself and asked for a referral to hospice. I told them I needed a hospital bed and a catheter delivered to my home. The delivery truck was in my driveway when I got home two hours later. I picked up Mom in my car and brought her to my home. She was in a bed in my living room in front of a picture window overlooking beautiful oak trees an hour later. “What a beautiful sight,” she said as I got her into bed. She collapsed into a sound sleep while I turned my living room into her new bedroom.

The eight days that followed are some of the best days of my mother’s life. My daughter snuggled up to her and they napped together. “I just love this,” Mom would say, patting her arm. My friends kept us supplied with food and smothered Mom with kisses. “I’m so happy,” Mom would say. My son cried as he held her hand. “I love you too,” Mom would say. Her out-of-state children, grandchildren, and friends phoned her to say their goodbyes. Mom was too weak to respond, but she heard every word and her eyes twinkled with recognition. Afterward she would say, “I’m so lucky.” However, it was her great-granddaughters that probably made the biggest impact. She never wanted them to leave her side. They didn’t want to leave her either. Ashlyn, the 12-year-old, asked her teacher if she could miss her field trip at school. “I would rather stay at home and take care of my great-grandma.” The lessons Ashlyn learned that day being “home-schooled” in death will no doubt be with her the rest of her life.

Ashlyn and her sister, Macy, spooned sherbet into Mom’s dry mouth and delivered straws full of ice cold water. “They’re going to make great nurses,” Mom would say. Macy drew Mom a picture and Ashlyn wrote a song and then sang it to her:
Every person on Earth
has a time to go
to the heavens above.
God will take care of you.
I will take care of you too.

Your time is almost up.
You will see God very soon,
But I’ll try my best to make you smile
And I’ll do my best to prepare you.
I will try to make you very
Happy.
You mean more to me than the deep
blue sea. You mean more to me
than the birds in the sky.
You’re more than flowers in pots.
You are mine. You are mine. I love you!

Mom smiled with happiness while the rest of us cried with pain and joy.
“I want to go to church,” Mom said.

There was a knock at my door. It was my colleagues from work coming to lend a hand.

     “Mom wants to go to church,” I told them. “Would you all mind being church for her?”

We sang her favorite song, “Let There Be Peace on Earth” and her favorite hymn, “How Great Thou Art.” We prayed. We touched. We told her to let go and to not be afraid. “This is so wonderful,” Mom would say over and over.

It’s been several weeks now since Mom died. Our final days together bring tears, smiles, and fulfillment. This might seem surprising when you consider that my mother was not close to any of her children, including me. Those eight days together healed much of the brokenness in our family. People change when they’re getting ready to “meet their Maker;” hearts soften, and perspectives deepen. Dying people are fertile ground for healing. If my mother could be here today, I believe she would say, “These were the best eight days of my life.”

The memories of our family rallying around Mom’s side to care for her and each other, night and day, give me strength and comfort. I’ve never been more proud of my family than I was during that week. I also feel reassured that when my time comes, my grandchildren are going to know how to care for me. How grateful I am that Mom didn’t end up in a hospital with blood transfusions and needles and, and… How grateful I am for the opportunity to teach my grandchildren that they need not be afraid of death. I also feel sad – sad to know how many people miss these moments. There’s a richness in the sacred time surrounding a good death that defies earthly understanding. And as much as I don’t like having to experience it, I wouldn’t want to miss it.

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