I've been researching death and have found the following statistics to be of interest:
- The US Supreme Court agreed that Americans should expect palliative care, which combines active and compassionate therapies to support people as they near the end of life. This usually involves avoiding burdensome pain and avoiding invasive technologies.
- Most deaths (70%) occur in people aged 65 and older.
- Most Americans die in hospitals (63%)
- 17% of Americans die in institutional settings such as long-term care facilities (Foley, 1995; Isaacs & Knickman, 1997)
- Most people receive a hospice referral too late which results in them not receiving the most benefit possible from this specialized care.
- Two-thirds of elderly patients have pain in the last month of life (Foley, 1995).
- One-third of elderly patients experienced unnecessary pain during the 24 hours before their death, according to caregivers.
- Although palliative care could relieve most pain and suffering, patients typically spend eight days in an intensive care unit comatose or on a ventilator before they die.
- 30% of patients spend at least 10 days in intensive care before they die. (Isaacs & Knickman, 1997)
- On average, physicians discuss end-of-life issues with patients for five to six minutes on average, talk two-thirds of the time and do not consider the patient's values or preferences. (Tulsky, Fischer, Rose & Arnold, 1998)
- Most patients report wanting their families to make end-of-life decisions for them in the event they are too sick to do so themselves.
- 41% of patients want physicians to make end-of-life choices without consulting them.
- Caucasians and Asians use advance directives more than other ethnic groups.
- Advance planning for health care helps people determine their own futures.
- The Patient Self Determination Act (PSDA) requires health care providers to document advance directives and educate patients about their rights to accept or refuse treatment.
Sources:
Isaacs, S.L. & Knickman, J.R (1997). To improve health and health care. San Francisco, CA: Jossey Bass.
Foley, K.M., (1995). Pain, Physician assisted dying and euthanasia. Pain 4, 163-178.
Tulsky, J.A., Fischer, G.S., Rose, M.R., & Arnold, R.M. (1998). How do physicians communicate about advance directives.Annals of Internal Medicine, 129, 441-449.
What follows is an assortment of thoughts and observations about death and dying.
- We need more open and honest conversations about death.
- To be able to vividly look back on one's life, and to look forward coherently when one is dying is a gift.
- Death is a non-exciting event. It's a lot of sitting around, lying around, being fed, bathed, toileted, medicated. It's a slow process.
- Death is exhausting, both for the individual dying, and for the loved ones and caregivers. Systems shut down gradually, and caregivers adjust to meet the needs of the patient.
- Even reading and watching TV are usually too much work for patients.
- We should study death. We should spend time with people who are dying to combat our ignorance about how it actually happens.
- The lack of control you feel when you're dying is terrifying.
- The idea of putting yourself out of your own misery provides some level of comfort.
- Contemplating dying on a daily basis is not necessarily a good thing, but keeping our own death always in mind is helpful.
- Knowing I will die helps me to have more kindness in my conversations with my family, coworkers, even strangers at the store. It helps me enjoy things more in the present. It helps me prioritize how I want to spend my time and to let go of things that I feel are a waste of my time. It helps me realize it is all finite and it all can be over faster than I think.
- Death is the most significant and consequential thing that will happen to us after our birth.
- Life is fragile and death is random, but despite that, life is the greatest blessing.
- I want to do the things I want to do, now. I don't want to die full of regret or grudges.
- For my funeral, I would like a lot of food, drink and people saying kind things about me.
During my last visit with Mrs. G., she was very agitated. I explained what happened in my volunteer visit report. It is below:
Mrs. G was awake and sitting in the living room when I arrived. Alex asked me to read to her so I did. While I read, he made her some toast with peanut butter on it. I read while she ate. Alex was in and out, doing other things around the house. I was reading along when I heard her plate clatter to the floor and I looked up. She looked like she had purposefully pushed it off her tray. I picked it up and asked her if she wanted me to stop reading. She said nothing.
After a minute she asked me, "What are you doing here?"
I said, "I'm Hannah. I'm the volunteer from Mission Hospice."
"Why are you here?" she asked.
"I'm here to spend time with you for a few hours."
She said nothing but looked confused, so I said, "I'm giving A a break for a couple hours tonight so he can get a few things done."
She said nothing. I wasn't sure what to do. I tried reading to myself for a few pages but Alex came in and asked his mom if it was okay if I read to her. She said nothing.
He said, "C'mon, just give us an answer."
But she didn't. He had me move to her other side and then asked me to read again which I did. After a few paragraphs, Mrs. G threw her water bottle off her tray, sending her pills flying. I picked up the pills and A picked up the water bottle. He seemed embarrassed and a bit apologetic about his mother's behavior. I practiced being a non-anxious presence and was aware of my own codependent tendencies and desire to somehow make everything okay for everyone.
But the truth is, nothing was okay. Here he is, a faithful adult son, stressed out with no time for himself, whose beloved mother is dying. Not only that but it seems that she has some kind of dementia because she wasn't behaving normally. I just took three deep breaths and held my tongue.
After a moment, he said he was going to pick up the dry cleaning and could I continue to try to read to her. I agreed, of course. While he was gone, I read aloud but I would stop and checkin with Mrs. G to see if she wanted me to continue, if she liked the story. She never answered my questions. I wasn't sure what was going on. I tried to engage her in conversation about her family and I pointed out several family photos on the walls and what looked like a nice photo of her deceased husband. She looked at the photos but never responded. I tried reading to her again.
She started saying his name, "A, A" repeatedly while I read.
I said, "He's gone out to do an errand but he'll be back soon. Can I help you with anything?"
She just kept softly calling for him. I wasn't sure she heard me so I put my hand on her shoulder and said, "He's not here right now."
She flicked my hand away so I got the message that she didn't want to be touched. I tried telling her again that he was just out picking up dry cleaning. She continued to say his name and rattle her tray, trying to get his attention. I asked her a few times if I could help her with anything, if I could get her anything, but she didn't respond. As we waited for him to return, her forehead grew creased and she seemed to be in mild distress. I wondered if she had to go to the bathroom or something. I just tried to be present and non-anxious although I'll admit, I wasn't sure what to do. I just sat quietly and did not read but that didn't help either.
When A came home, he took one look at her and said, "OK, mom. You want to go to bed, don't you?"
She said nothing. He took her to the bedroom and said goodbye to me, after he confirmed that he wanted me to come back next week. It was a bizarre visit.
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It wasn't until I arrived home that I realized how impacted I was by this visit with Mrs. G I had plans to go to a favorite watering hole with my wife and our friend, but I ended up just wanting to stay home and lie on the back deck for a while. It was a nice evening with a cool breeze after a warm day. I just laid there listening to the birds and feeling the wind on my face and arms. My cat came and curled up next to me on one side and my dog laid down on my other side. I felt loved and held. I pondered what had transpired with Mrs. G and A. I was aware of my tendency to take things personally at first. Whenever I would review my actions and what I said and did, I kept at bay the thought that, "maybe, if I had just done or said X instead, she would have responded more positively." It was hard. But I know, through my 12-Step work and my work on codependence, that I am not responsible for making other people happy. I understand that in this role, I am to be a compassionate presence, but it is not up to me to fix anything. And in fact it is not about me. That became my mantra as I waded through the next couple of days. Whenever thoughts about Mrs. G. and our strange visit would come back to me over the weekend, I would say to myself, "It is not about me."
I received a phone call from my supervisor at Mission Hospice who wanted to check in with me after reading my visit report. She informed me that Mrs. G has a form of dementia, which made everything fall into place. I had suspected as much during my visit but I wasn't sure. I was grateful for the information because it really helped me to understand Mrs. G better. It will also guide my interactions with her in the future. My in-laws have dementia and I've spent considerable time with them. I know it manifests differently in everyone, but I know the basics about how to communicate with dementia patients. Questions can be very hard for them to process. So when A and I were asking Mrs. G repeatedly if she wanted me to read to her, it may have caused her stress and made her unable to answer.
I am grateful for the support of Mission Hospice and for the loving, safe space I call home. This work is not always easy so the support network for caregivers is critical. This work has taught me that the people in that support group are what's really important. It's people and relationships that matter. Nothing else. And this is it! THIS - sitting with people who are dying, learning to be less codependent, lying on the back deck, waking up in the morning, communicating with coworkers, helping people, loving our family members, cooking, cleaning, doing laundry - THIS is it! I want to live it as well as I can. That is my prayer. Amen.
In modern American society, we hardly ever see death or dying people. They're kept tucked away in hospitals, nursing homes or private homes, out of public view. So we hardly ever think about the end of our lives, which is strange really because it's the one thing we are all guaranteed to have.
Contrast that with people living in a less industrialized/developed country. There may not be the financial capabilities, nor the desire, to place a dying family member in a nursing home. And so the family adjusts its schedules, finances and daily living practices to care for the dying person. While this is difficult, and not something I would readily sign myself up for, it is certainly instructive. It means that the whole family -- adults and children alike -- are exposed to the process of dying, 24/7. They witness the body gradually shutting down. They see their loved one sleeping more, resting more, having less energy and less alertness. They witness the arms and legs growing mottled as the body shunts energy and blood away from the extremities and toward the vital organs. They are present for the whole dying process.
What a gift! Not to downplay the difficulty of watching a loved one leave this earth, or the daily work of caregiving, but it is a gift nonetheless to witness a human body naturally moving through its autumn toward its final winter. It is instructive. It gives one a different frame of reference from what we see on TV, which usually shows an intense, quick, painful experience of dying. It seems as though in reality death is a long, slow, drawn-out process that can take over a year!
It also gives one an opportunity to grieve. It helps one let go of the dying person because one is in tune with the body's natural dying process. Perhaps a long, slow process helps us to more easily accept the end of a life.
And yet we continue to postpone death through extreme medical interventions, and every means possible. We even try to erase signs of aging with hair dyes and plastic surgery. As a culture, we are so uncomfortable with aging and death and we glorify youth and life.
Because we do not ponder our own death, and because we hardly see or experience death, we do not fully live. We get distracted by advertising that tells us we need to worry about possessions, looks, sports teams, celebrities and clothes. We do not really live our lives. We forget to explore the depth of our soul, or that of others. We rush through meals instead of savoring each bite and reflecting on the miracle of a plant becoming a seed that then becomes a plant that nourishes our bodies. If you stop to think about it, it really is amazing!
I start my weekends by keeping Mrs. G company. Mrs. G is dying. She is a kind woman who has slept through two of our three visits. I mostly sit and read. If she's awake, I read to her or talk with her. I feel connected to her. I pray for her during the week and for her son, A, who is so attentive and loving as he cares for her.
Keeping company with the dying means being present to them. Mission Hospice says its mission is to provide support for clients so they can have dignity and independence for as long as possible. As a patient care volunteer, I often read, play music on my phone, talk or just sit quietly at the bedside of my patients. I keep them company. I enjoy this work. Like most things in life that are worthwhile, it isn't earth-shattering or stunning. It's quiet, simple and unobtrusive.
I often feel so much calmer after a visit with a patient than before. Just sitting quietly for two or three hours can be quite peaceful. My life is so busy and I'm often going here and there for meetings or to visit loved ones or to work or school. It's a gift to be able to sit quietly and not think about my own life for a while.
The main reason I like this work is that I feel I'm truly helping the caregivers. I know I'm providing much needed relief so they can go grocery shopping or wash their car, or just go into another room and sleep. I'm glad to give six hours a week or so to others. Often these are adult children in their 50s who have very little support in caregiving for their dying parent. They often have full-time jobs, and they are trying to manage care for their dying parent on top of everything else. I'm grateful for the opportunity to help them. And they are grateful for me. Their eyes tell me as I leave, as do their "thank yous" how much they appreciate the break they've received. Just that -- a sincere word of thanks -- does a world of good. It lifts my spirit and buoys me up as I return home to my family.
This interaction, this brief exchange of gratitude, is so simple, and yet it brings happiness in general. I find that I have more patience for others. I don't get as flustered by life's inconveniences. I am kinder to people -- family, friends, strangers, customer service representatives -- because really our energy in this present moment, is all we have and I'd rather spend it in kindness and patience than anger or irritation. I'd rather treat people, animals, plants, the earth, and moments with kindness, gentleness and love than run roughshod over them to arrive at the end of my life -- or any moment of my life -- and find that I'm friendless because I've been a poor friend. Or that I have plenty of things but no one to share them with because I wasn't attentive to others as I acquired these things.
Relationships are the heart of life. As Christians we are called into community with others. We aren't really Christians without community. It's only in relationship to others that we see our own strengths and weaknesses and work on them. We make mistakes and we mess up. We ask for forgiveness and we give it freely to others. This is how we fully live.
I'm grateful that keeping company with the dying has taught me that.
What does it mean to die well? How something lives is how it will die, I've often heard it said. I can see that this is true in a way. So what does it mean to die well?
Living Well and Dying Faithfully by John Swinton and Richard Payne says "Pain, anguish, alienation, and brokenness remain profoundly important, and we continue to do all we can to alleviate them. However, we strive to alleviate them not only because people do not want to experience such things, but because suffering can serve a deeper negativity as it functions to separate us from the love of God, self, and others" (p. xix, Introduction).
I certainly struggle to worship God as creator, healer, sustainer and redeemer as I watch my mother-in-law and grandmother-in-law slowly deteriorate with Alzheimer's disease. We celebrated Grandma Lolly's 98th birthday, which consisted of her reading two birthday cards over and over again. Her mind is completely gone. Her memories are all but gone. She has to be bathed, toileted, fed, medicated and cared for in every possible way. When offered a piece of her birthday cake, she said, "A girl like me doesn't eat things like that." And we laughed it off. We tried again and she said, "I can't have that. I'm not good." Her filters are stripped away. We see her deep beliefs about herself as clearly as we can read a child. It's heart-breaking to hear such sad, negative beliefs as "I'm not good." But what can you do?
Most of us want to die quickly, painlessly, in our sleep and without being a burden to anyone. As I interact with more hospice patients, I'm realizing that is a far cry from reality most of the time. Unlike the movies and TV portrayals, death is often a slow process that can take months or even years. Families often bear the burden of a dying parent or grandparent for years, with careers put on hold, and relationships altered. Grandma Lolly has had Alzheimer's for 15 years or so; she has been dying for as long if you ask me. And now her daughter, Amy, is on the same path.
Amy said to me on multiple occasions, "If I ever get to be like my mom, just kill me. Please, kill me. I don't want to be like that." I heard her at the time but did not really think it would get to the place where I would actually feel the weight of that request. I feel it now. She has been in a skilled nursing facility for the past month, fighting an infection, and recovering from a surgery. We have spent many nights after work, and weekend hours, with Amy, who barely seems to know us. I wonder if she remembers who I am. She doesn't have the light of recognition in her eyes that she used to have when I walked into her room.
What does it mean to die well when you don't even know where you are, who your children are, who you are?
I met a new patient this week. She slept the entire time I sat with her so I don't really know much about her personality. She is semi-responsive. She's full code which means she should be revived and all attempts should be made to save her life. The opposite of full code is DNR, Do Not Resuscitate. I wonder why the patient wants to be revived at all possible costs. If I knew my body was shutting down, and if the doctors had written the order for hospice, I would work on accepting the end of my life. Heroic efforts to save a dying body seem to lead only to comas, life-support machines and the strange gray no-man's land between life and death that so many families struggle with.
But this patient is full code, which for me as the hospice volunteer means that I must call 9-1-1 if anything dramatic changes on my shift. It's important to know this detail as I begin each shift. It is literally a matter of life-and-death. The difference for me is that I would choose death, as far as I can tell from this vantage point.
For the first time I put on my Mission Hospice Volunteer badge and sat with someone who was actively dying. She was in her nineties dying from cancer. Her family had requested volunteers sit with her around the clock and I was part of the vigil. I only had one hour after work. That hour changed my life.
Her breathing was labored. Her heart raced. Her body was unusually warm, like she had a fever. She was unresponsive. Her eyes and lips hung slightly open.
I spoke to her, talking about politics, my life, the pictures on her walls. I read to her from the Book of Common Prayer. At one point, she made a sound, almost like a syllable; it was after I had finished reading this prayer:
O God, whose mercies cannot be numbered: Accept our
prayers on behalf of thy servant N., and grant him an
entrance into the land of light and joy, in the fellowship of
thy saints; through Jesus Christ thy Son our Lord, who liveth
and reigneth with thee and the Holy Spirit, one God, now
and for ever. Amen.
The rest of the time she said nothing.
I sat and watched her breathing, recognizing that she was nearing the very last moments of her life and feeling deeply honored to be present to her and her family. It was sacred space. I felt the truth of what I'd learned in volunteer training - that my role was simply to be a compassionate, non-anxious presence, nothing more. It's amazing how hard that can be!
I found myself thinking about my worries as I watched her breathe. They seemed to pale in comparison to what she was experiencing, what I would experience one day, what we all will. Even if our death looks much different from this one, we will all pass the threshold from this life to the next. And then will it matter how many calories we ate? How we looked in the photos? How we're insecure about certain people or situations?
It's not that those things don't matter. It's just that when you get to the end of your life, you're not going to want to have spent a lot of your precious time here perseverating about such things. You'll want to have worked for social change, volunteered to help someone's life be better, learned how to love your loved ones more skillfully, forgiven people, let go of grudges and burdens.
Our culture does a good job of distracting us from what really matters. It tells us that makeup, brand-name clothes, shoes, purses, luxury cars, celebrities, sports teams, video games, television, movies, looking good on social media, having possessions that scream status - it tells us that these are the things that matter. But they're not. They are just distractions from real life. Real life is children, animals, people, nature. Real life is working on yourself so you're a little bit less of an asshole, a bit more compassionate, a bit more patient and understanding.
Dying itself is a job in itself. It's hard work. I could see that as my patient lay there, breathing more slowly each time. She's not thinking about any of this stuff now. She's just waiting for her body to cease operations. She's shutting down programs, logging off. It's hard for the body to cease all the functions that have sustained it over the last century. It's not used to stopping its heart and breathing. The body is working to maintain function. It's still a process, this learning to let go, even to the very end.
