A sermon by Brian Mason
First Universalist Unitarian Church of Wausau
March 24, 2019

One afternoon when I still worked as a chaplain for Saint Louis University Hospital, I was covering for a colleague who oversaw the geriatric unit. On this particular afternoon I was summoned to a meeting with one of the unit’s attending physicians, along with her team.

The doctor, flanked by a gaggle of resident physicians, informed me that in the next couple hours they planned to inform a family that the team had decided to withdraw medical care on a 102-year-old woman. They explained that the family of this patient was adamant about getting the patient back home so she could die surrounded by her family and familiar things. The woman’s daughters insisted that their mother be given fluids and nutrition and then immediate transport back to their home, in Illinois.

The doctors refused. They insisted that transport risked causing undue pain and that feeding her was, at this point, futile. The woman’s body was shutting down, they said; and the most humane thing to do was to let her die here in the hospital, and now.

When I walked into the102-year-old’s room for the conference I hardly noticed there was a patient in the bed at all. The woman was so small and frail, and she had pulled the covers clear up to her forehead so that all I could see was the crown of her head, which was covered with wispy grey hair.

On either side of the bed sat the woman’s daughters, both of whom were old enough to be my and most of the doctors’ grandmother. With 7 or so resident physicians beside her like bodyguards, the boss doctor explained her position to the patient’s daughters, repeating the same thing she said to me just a few minutes earlier: in the next couple hours they would stop administering health care and transition to comfort care, which means pain and anxiety medicines only. Once the switch was made, the doctors told the patient’s daughters to expect their mother to live a matter of hours, if not minutes.

I’d estimate that I’ve sat through hundreds of these meetings over the years. In most cases families and friends ask a few questions and, of course, they shed a lot of tears. Losing people is never easy, it doesn’t matter is they’re 2 or a 102. But people usually agree with the doctor’s recommendations; they begin notifying friends and relatives, and finally they gather at the bedside to pay their respects and say “goodbye.” This is a common scene in America today; more than 60% of Americans die in hospitals every year.

Knowing all of this, I expected the daughters of the 102-year-old woman to respond like I had seen so many families before. After all, Ms. Malden, which was her name, at least for today, hadn’t spoken for several months; she hadn’t eaten solid food for weeks; and she hadn’t sat up on her own for quite some time. For the past 7 or so years Ms. Malden’s daughters cared for their mom with little to no assistance, which is to say that they did it all themselves.

In recent weeks they found themselves doing everything for her—they bathed her, cleaned her house, and fed her three times a day like she was a child. I say all of this only to put you in the same place I was as I stood there in that hospital room with Ms. Malden, her two daughters, and half-dozen doctors.

After the information was presented and the customary solicitation of questions, all of us who were being paid to be in that room, the “experts” if you will, were all but certain that Ms. Malden’s daughters would accept the expert opinion without pause or protest. But this wasn’t what happened. This wasn’t what happened at all. Both daughters calm and with faces like stoic philosophers looked at each other and without having to speak a word turned back and said, “Thank you, but Ms. Malden just wants to go home.”

If the doctors were trying to hide their shock they did a very poor job of it. I suppose the boss doctor thought she wasn’t heard the first time so she repeated herself. But the two stoic philosophers wanted everyone to be certain they were hearing what was being said, so they nicely announced that they appreciated everyone’s time and the suggestions. “But that’s not going to happen,” they stated. “Ms. Malden,” they reminded us, “just wants to go home.”

There was a time when death was unconcealed—when seeing the dead was as common as cars and supermarkets. It is said that ancient Rome occasionally took on the smell of death with all the dead bodies lying about. Here in the United States, not all that long ago, most people died in their homes. There was also a time when having your mother or father spend the final years of their life in a nursing home was all but unthinkable. Of course, then like now, there have always been circumstances that necessitated someone’s move to a facility. But things are very different now.

Today, the elderly, especially when they or their families are poor, can be sent by bureaucrats at state agencies to live in soulless facilities run by the state or some for-profit company. When I was growing up our neighbor old Ms. Ramsay could barely walk. Her house was a wreck and the only thing she used her stove for was to stack cereal boxes on it; her counters were covered in bowls of half-eaten cat food. Her cats had mostly taken over the house as their own. But my dad and several other families on Old Jackson Road dropped by Ms. Ramsay’s everyday to bring her food. They mowed her lawn and grabbed her mail. When her water got shut off they grabbed her pocketbook and forged her signature on a check they drove down to the water department. Ms. Ramsay was the responsibility of the people on the block.

Today governmental agencies do most of the caretaking of the Ms. Ramsays in America. They dispense what Max Coots called institutionalized humanitarianism. Social workers in dimly lit offices determine who gets to stay in their home and who gets removed based on criteria handed down by so-called “experts.” In Washington, D.C., middle-aged people with master’s and doctorate degrees write policies that craft the questions on forms, the answers to which determine one’s level of freedom and how much government aid they get.

Don’t get me wrong; I like institutionalized humanitarianism very much. But a person’s freedom to live how they want and die where they want matters to me more than what experts in healthcare and social welfare say. You see, society’s welfare matters to me because I believe all human beings have worth and everyone deserves the right to a free and dignified life in accordance with their own convictions so long as it doesn’t harm anyone else.

What I don’t like and what I will never support is a government with the power and authority to contradict someone or someone’s family’s wishes. I will never support a politician who believes it is the government’s right to determine how someone lives, whether someone’s house is clean enough, and how someone will die. I refuse to support a government that powerful because it appears to me that what occasionally ends up putting people in nursing homes or hospitals against their will has little to do with someone’s safety or best interests, but rather everything to do with offense.

In the case of Ms. Malden, it was someone who visited the home who turned the family in. The report stated that the visitor was appalled by the smell of the Malden home and disgusted that her daughters were feeding the old lady baby food and having her drink from a child’s sippy cup. This friendly neighbor felt that the only humane thing to do was to let this woman die, and so she reported Ms. Malden’s daughters to an elder abuse hotline, and just a few hours later she was on an ambulance to the hospital.

Don’t misunderstand me; I don’t question the need for hygiene and good nutrition and hydration. I don’t question that some people truly are victims of abuse, and sometimes at the hands of their own family. I don’t question that when it’s time to die, it’s time to die. But the only thing that Ms. Malden and her daughters offended was the friendly neighbor’s sense of smell and cleanliness.

Modern culture has developed certain attitudes toward the elderly and the ill. There’s an assumption that because we’re in our prime or because we are professionals then we can tell old or poor people what to do. Moreover, as in the case of Ms. Malden, we think that expert opinion grants an authority that allows us to tell someone when it’s time to die.

Moreover, we live in an age that worships youth. However, the youth we worship comes from advertisers who tell us what it’s supposed to look and smell like, and then they sell us a bunch of junk that does very little to stop us from losing our hair and slowing down and getting wrinkles. But that doesn’t stop us, so we smear age-defying creams on our face and bodies, we take pills that help get lazy body parts back up to where they used to be, we get chemicals injected into our faces to smooth wrinkles and pay surgeons to make us look like the people we see in magazines and movies. I suppose that if any of this gives a person confidence and pride, then go for it. But I cannot help but question if this opposition to aging and avoidance of the everydayness of dying hasn’t muddied our ability to see humankind for what we really are: smelly and fragile, and dependent and temporary.

The thing is, I don’t know if I want middle-aged and so-called “experts” telling me how to live and die. Of course they’re only telling us what they think is best, but I can’t help but wonder if what they’re saying is really what’s best for themselves. I don’t know if I want someone who’s never held me as I cried or split a bottle of wine and laughed until midnight with me to look at a stack of papers about my lifestyle and living arrangements and determine what is in my best interests. I don’t know if I want someone who spends more time looking at my medical chart than into my eyes to have the authority to tell me what medical treatments I can and cannot get. I don’t know if I want someone to have the authority to make me die in a hospital when all I really want to do is die at home.

I’m not saying we should boycott doctors or social workers. I’ll be the first to admit that I run to the hospital after a sudden and uncontrollable burst of sneezing or a sore elbow. Nor am I saying I want to go back to the days when the local poor master handed out social assistance, or when the sick and disabled were sent to sanitariums. I don’t want to return to the days when the hungry had to line up in the streets for a cup of soup and hunk of bread. I don’t want anybody to feel like they have to beg for help. I like some aspects of institutionalized humanitarianism very much. Society has taken many steps in the right direction and added a necessary level of dignity to receiving social welfare.

What I’m saying is that I want our culture to mature beyond the point of paying so much deference to the interests of hospitals and so-called expert opinion and rather to what a person says they need and want, even if what they want is smelly and messy and odd. I want people to look in on their neighbors. I want it all, I want a helpful government and I want citizens to love their neighbors as they love themselves.

After the conference with the medical team took place, Ms. Malden’s daughters refused to allow their mother to be taken off nutrition and hydration. The social workers readied the usual attack. First, they called the lawyers, and then they called the doctors. They sat the daughters down with an endless stream of experts: nurses, social workers, doctors, and chaplains. But her daughters never waivered—Ms. Malden just wanted to go home.

After two days of this I had grown quite tired of Ms. Malden and her daughters. I had to explain their story and this situation to this or that team of doctors, this or that social worker, and this or that lawyer. I knew in my heart of hearts that this was a fight that would be fought until she left or died. So I did the only thing I could think of.

I invited Ms. Malden’s daughters to have lunch with me. I prayed and decided to throw out my customary façade of professionalism. I dispensed with formality and spoke to them as a man, as a son and husband, and as a father. I told them I couldn’t understand why they wouldn’t just let their mom die. I told them that if that were my mom lying in that bed I’d say goodbye and let her go. I told them that it looked to me and to a lot of people like they were in denial. I bluntly and rudely asked them if they even cared if their mom might be in pain. I looked down on them from my pedestal and reminded them that they were contradicting the opinion of experts.

Ms. Malden’s daughters told me that they understood how, from the outside, their opinions looked quite odd. But before their mom stopped speaking, Ms. Malden told her daughters to make sure she wasn’t out of her mind on pain medication in the end. She also told them that she wanted to be home, with her garden, covered up with her sheets, and lying in her bed when she died.

We might think some of what Ms. Malden cared about as being strange. The thought of refusing pain medicine might terrify us. The thought of nursing someone so sick along might challenge our sense of what’s right and wrong. But I’m not telling your story this morning. You see, I practice a faith that believes in the inherent worth and dignity of all people, even people I don’t agree with. My faith challenges me to believe that everyone has the right to name what is true for themselves. This isn’t to say that I believe someone has the freedom to say green is red and up is down. But it does mean that I believe someone has the right to refuse pain medicine, or blood, or any other medical procedure if they say so; I believe someone has the right to pray in school; I believe someone has the right to live according to the principals of their faith in God or Allah. I believe in the freedom of religion and conscience, even when it challenges and offends me to do so.

Ms. Malden was the granddaughter of slaves. She was raised to believe that suffering was a part of life; and she believed that life, the good, the bad, and the painful and ugly were given to her by God. She believed that suffering had the ability to bring someone closer to God. And she believed that death wasn’t the end, but a doorway through which she entered into eternal life with her God and her late husband and all the faithful departed.

So, when the hospital staff gathered to debate if they would force Ms. Malden to take pain medicine and die in the hospital I decided to show up and plead for Ms. Malden’s right to die at home, even if it risked her dying in an ambulance. I told everyone that I believed Ms. Malden has the right to die in accordance with her own wishes and that even if we think her religion and ideas about suffering are stupid that as far as I knew it wasn’t against the law to be stupid. I also told them that I didn’t think Ms. Malden or her daughters were stupid at all. In fact, I admired them. It takes courage to stand for what you believe in. It takes courage to challenge a society’s assumptions.

Ms. Malden did finally go home. She lived just a few more days. I liked to imagine her with the covers pulled up to her forehead, with just a few wisps of grey hair poking out from under. I’m certain her daughters continued caring for her as they had before, amidst the smell and the baby food and the sippy cups.

Ms. Malden’s daughters mailed me their mom’s obituary that ran in the local newspaper. It turns out Ms. Malden was the first African American woman to be admitted into a university’s chemistry program where she obtained a Ph.D. It said she dedicated her life to teaching chemistry to college students. The article also said that her love of chemistry was inspired by her belief that when she studied atoms and elementary particles she gained a deeper understanding of God’s own handiwork. When Ms. Malden peered into a microscope she didn’t just see substance on a slide, she saw God. She saw God in the periodic table. She saw God in everything. She even saw God in you.