Tag: end-of-life

All of life is worth living

The other day, I performed the solemn rite of white women in their late 40’s: I shared a photo of my lunch salad on social media.

The ritual goes like this: I post a photo of my lunch, and I complain about trying to lose weight, and then I humblebrag about my plate full of nutrient-dense leafy greens and lean proteins, and I say that between this and yoga, I’m going to live forever. Then my friends commiserate about how, if I keep it up, I’m not going to live forever; it’ll just feel that way. Then we all anoint ourselves in the digital stream three times, sprinkle ourselves with irony, and we are cleansed.

This ritual has worked for me for many years. I’ve always looked at health fanatics with something of a jaundiced eye, thinking, “If that’s what it takes to extend my life, I’d rather cut it short, thanks.”

Jokes like this were very much a part of my family culture, growing up. My father, in particular, believed that life was worth living as long as you were enjoying yourself, and if you weren’t, well, maybe your time was up. Or at least, part of him believed that. He especially liked to eat whatever he wanted, as much as he wanted, and he really relished heavy foods, sugary, fatty foods, noodles and greasy briskets and things filled with cream. (And so do I.) He wasn’t exactly a hedonist. He believed in constant conversion of heart and the resurrection of the body and things like that; he really did. But in practice, noodles and brisket often got the upper hand.

I want to tread carefully, because it’s easy to get carried away when you’re telling the life of someone who is dead. I don’t want to speak for him just because he can’t speak for himself anymore. So I will just tell you what I observed, as I remember it, and maybe the conclusions I drew were wrong. Nevertheless, this is what I saw:

My father’s health was poor for many, many years, partly because of his personal habits, and partly because of terrible genetics. I remember him going in for serious medical procedures throughout my childhood, starting at about the age I am now. He had a hard time staying motivated to take care of himself, although he did keep trying, for his family’s sake.

But eventually, he really lost enthusiasm. He had the choice to correct a problem with heart bypass surgery, and he didn’t want to do it. It just didn’t seem worth it to him. His family felt differently, and we urged him to consider it. We contacted a friend of his, who had had the same surgery done, and was very glad that it bought him some extra years of life; and that finally did it. My father agreed, and he got it done.

And he got better. He recovered well, even in his old age, and he started doing so well. He had a lot of health problems, still, but he accepted this; and my overall memories of him from this time are of him smiling. Smiling at my kids, smiling up at the sky, smiling at the brilliant clouds, at birds singing, at snow melting, at records playing. This was something new for him, or something he hadn’t felt in decades. He seemed to be enjoying himself in a way that I had never seen him do, ever.

But how strange it was, to see him looking small. I had to keep correcting the image I had of him in my head. I still thought of him as a powerful, deep-bellied, overbearing, heavily bearded man, taking up as much space as he wanted. Never bothering to whisper in quiet places, never bothering to follow signs that said “no admittance.” I still thought of him as doing what he wanted. And he wasn’t like that, anymore. His clothes hung loosely; the top of his head showed through his brittle hair. His voice was muffled, as if wrapped in cotton. He was so physically diminished, and he shuffled, and tipped over sometimes. But he smiled so much.

It was also during this time that some personal reconciliations happened, or started to happen. He knew he was at the end of his life. But that was the key: He knew it, and he was getting ready, rather than dolefully sliding along. He said that the Lord was taking more and more things away from him, and he was glad, because it was getting him ready for death. He smiled when he said this, too. He was grateful it was happening—the getting ready, not the dying.

So, then he died. It happened quite suddenly, and I’m not sure if it was COVID or not. He went to watch TV in his reclining chair, and when my brother went to check on him, he was on the floor. It was very hard when he died, and I won’t pretend he made his peace with every last person, or that he had righted every wrong, before he went. There were a lot of wrongs. But those last few years were undeniably, irreplaceably fruitful. For him, and for many of the rest of us. Fruitful enough that they are not yet over, even though he is dead.

If you are halfway imagining that people live the real bulk of their lives when they’re hale and hearty and doing as they please, and that they slowly dwindle into a less and less meaningful existence as the standard earthly pleasures drop away, well, possibly that’s true for some people. There are many ways for the course of a life to run, and not all of them are within our power. The end of my mother’s life looked very different from my father’s. But even that was not what you might think. Strangely enough, caring for her in her profoundly vulnerable and inert state was a huge part of what transformed my father’s final years, which makes me almost quake with fear when I think of my mysterious mother and her strange, quiet power to change people, for good and for ill. A power that continues to burn and insist, like the light from a star that is already dead. 

As I said, I am reluctant to tell you what someone else’s life means. So I’m not going to tell you that the last two years of my father’s life were his most significant. I’m just telling you that there was a time when he thought he could have done without them, and he was wrong.

Take care of yourself. Take care of your poor, dumb, needy body. Your body’s time will run out eventually, because it isn’t meant to last forever; but it isn’t meant only for pleasures and satisfaction, either. Most people are joking when they say life isn’t really worth living if you’re just eating salad, but most people also halfway believe it. Don’t you believe it. Your time on earth is your time on earth. If you’re still here, it’s for a reason.

*

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A version of this essay was originally published at The Catholic Weekly on May 5, 2023.

NH: call to oppose ableist physician assisted suicide bill HB1659

NH is again considering passing a physician assisted suicide bill. HB1659 will get a hearing on March 4. It says:

“This bill allows a mentally competent person who is 18 years of age or older and who has been diagnosed as having a terminal disease by the patient’s attending physician and a consulting physician to request a prescription for medication which will enable the patient to control the time, place, and manner of such patient’s death.”

Sounds compassionate. Those who argue for physician assisted suicide often paint an emotional picture of a dying patient who’s unable to escape immense pain, and who’s simply looking for release and relief.

But statistically, that’s not what happens.

Rehumanize International reports:

From a study of the results of Oregon’s 2013 Death with Dignity Act: 

91% of patients cited “loss of autonomy” as one of the concerns that led to them requesting assisted suicide. 89% cited a fear of being “less able to engage in activities.” 81% cited “loss of dignity,” 50% cited “loss of control of bodily functions,” and 40% cited “feelings of being a burden.”

We should not simply accept that fears of disability are driving people to suicide. Everyone deserves suicide prevention care — including those who are ill or disabled. 

The NH bill mentions broad concerns like “loss of independence” and “embarrassing indignities” as reasons to seek suicide. 

As NHCornerstone points out, “By making assisted suicide part of the discussion and a treatment ‘option,’ especially when someone has a chronic illness, it’s only a matter of time before personal choice becomes a ‘duty to die.’” 

Assisted suicide bills are driven by ableism that preys on the vulnerable. They tell people who are already in distress, “If you can’t do everything an able-bodied person can do, your life isn’t worth living. It would be better for you and for everyone else if you were dead.”

We don’t talk this way to people. We don’t tell them, “It would be cheaper, easier, better for everyone if you didn’t exist.” Instead, we try to make vulnerable people’s existence more manageable — lessen their pain, relieve their distress and depression, bring services to them, keep them company, reassure them that they are entitled to be alive in the world, just as much as the strong and healthy and productive.

This is, in fact, what NH is allegedly already doing, as it struggles mightily to decrease the state’s suicide rates, which have increased an astounding 48% from 1999 to 2016, significantly higher than most of the country, especially among teens. How can we say we have a goal of zero suicides while also telling vulnerable people that suicide is part of normal medical care? The bill is dangerous and offensive in itself, and also opens the door for even broader legislation that will encourage and even bully people into believing it’s their duty to remove themselves from the world. 

The Diocese of NH sent a good letter to the House Judiciary Committee laying out what an offensive and dangerous bill it is.

NH residents, we have a duty to reject discrimination, including the ableism that disguises itself as compassion. Please take a minute and contact your state rep and ask him or her to vote against HB 1659. You can use this site to find out who your representative is, and click on their name to get contact information. 

Feel free to copy and paste anything from this post. If you call, you just have to give your name and that town your calling from, and say that you’re calling to urge your rep to vote against HB 1659 regarding assisted suicide. My state rep was out of the office for the week when I called, so I left a message saying I strongly urge him to oppose this bill, because it’s a form of ableism and is totally at odds with any efforts to reduce suicide in our state. If you have a personal story to tell, that’s probably a good thing to include.

I know it’s hard to take time to stop and make a phone call or send an email, but we are a small state and our voices really do make a difference. Tell your rep what you want! 

Further reading: Pro-life Even at the End of Life: What the Catholic Church Teaches about Care for the Dying

Charlie Gard will die. But is it murder?

Here, I will not discuss the question of parental vs. state authority in life-or-death decisions. I only want to talk about the life-or-death decisions themselves, and I want to challenge the brutally simplistic narrative that there are two sides: People who want to treat Charlie further, who are good, and people who want to withdraw Charlie’s life support, who are bad.

It’s not so simple.

Read the rest of my latest for The Catholic Weekly.

Photo: U.S. Air Force photo/Staff Sgt. Bennie J. Davis III

What the Catholic Church teaches about death with dignity

“Death with dignity” laws are both sensible and compassionate; religious prohibitions of suicide are both emotional and cruel.     

Too often, that’s how the narrative goes when we discuss end-of-life issues and the laws surrounding them. Secular folks claim that, when people of faith protest against legalized suicide and euthanasia, our arguments are based in emotion, passion, or even a sadistic appetite for pain and suffering.

On the contrary, the Catholic Church’s teachings are both consistent and compassionate.

In light of recent discussions of Supreme Court nominee Neil Gorsuch and his views on assisted suicide and euthanasia, and in light of the story of a Dutch doctor who directed family members to hold down a struggling old woman so he could carry out her “assisted suicide,” I’m sharing again this article from 2013. The research I did for it corrected many of my own misconceptions about what it means to be pro-life at the end of life.

***

“Technology runs amok without ethics,” says Tammy Ruiz, a Catholic nurse who provides end-of-life care for newborns. “Making sure ethics keeps up with technology is one of the major focuses of my world.”

How do Catholics like Ruiz honor the life and dignity of patients, without playing God—either by giving too much care, or not enough?

Cathy Adamkiewicz had to find that balance when she signed the papers to remove her four-month-old daughter from life support. The child’s bodily systems were failing, and she would not have survived the heart transplant she needed. She had been sedated and on a respirator for most of her life. Off the machines, Adamkiewicz says, “She died peacefully in my husband’s arms. It was a joyful day.”

“To be pro-life,” Adamkiewicz explains, “does not mean you have to extend life forever, push it, or give every type of treatment.”

Many believe that the Church teaches we must prolong human life by any means available, but this is not so. According to the Catechism of the Catholic Church, “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of “over-zealous” treatment” (CCC, 2278).

Does this mean that the Church accepts euthanasia or physician-assisted suicide—that we may end a life to relieve suffering or because we think someone’s “quality of life” is too poor? No. The Catechism continues: “One does not will to cause death; one’s inability to impede it is merely accepted” (CCC, 2278).

Richard Doerflinger, associate director of Pro-Life Activities at the USCCB, explains that caregivers must ask, “What good can this treatment do for this person I love? What harm can it do to him or her? This is what Catholic theology calls ‘weighing the benefits and burdens of a treatment.’ If the benefit outweighs the burden, in your judgment, you should request the treatment; otherwise, it would be seen as morally optional.”

Palliative care is also legitimate, even if it may hasten death—as long as the goal is to alleviate suffering.

But how are we to judge when the burdens outweigh the benefits?

Some decisions are black and white: We must not do anything, or fail to do anything, with the goal of bringing about or hastening death. “An act or omission which, of itself or by intention, causes death in order to eliminate suffering constitutes a murder gravely contrary to the dignity of the human person and to the respect due to the living God, his Creator (CCC, 2277).

The dehydration death of Terry Schiavo in 2005 was murder, because Schiavo was not dying. Withdrawing food and water had the direct goal of killing her.

But if a man is dying of inoperable cancer and no longer wishes to eat or drink, or his body can no longer process nutrition, withdrawing food and water from him might be ethical and merciful. He is already moving toward death, and there is no reason to prolong his suffering.

Moral Obligations

Our moral obligations are not always obvious. Laura Malnight struggled with doubt and fear as she contemplated the future of her tiny newborn quadruplets. Two of them had pneumonia.

“It was horrible to watch them go through what they had to go through to live, being resuscitated over and over again,” Malnight says.

One baby was especially sick and had suffered brain damage. The doctors who had pushed her to do “selective reduction” while she was pregnant now urged her to stop trying to keep her son alive. “They said we were making a horrible mistake, and they painted a terrible picture of what his life would be like in an institution,” Malnight says.

Exhausted and overwhelmed, Malnight was not able to get a clear answer about the most ethical choice for her children.

Everyone told her, “The baby will declare himself,” signaling whether he’s meant to live or die. “But,” says Malnight, “my only experience with motherhood was with these babies, in their isolettes. The thing was, we would put our hands over our son and he would open his eyes, his breathing would calm.”

“We just kind of muddled through,” she says. Her quadruplets are now 13 years old, and her son, while blind and brain-damaged, is a delightful and irreplaceable child.

Doerflinger acknowledges Malnight’s struggle: “Often there is no one right or wrong answer, but just an answer you think is best for your loved one in this particular situation, taking into account that patient’s own perspective and his or her ability to tolerate the burdens of treatment.”

The key, says Cathy Adamkiewicz, is “not to put our human parameters on the purpose of a human life.”

When she got her infant daughter’s prognosis from the neurologist, she told him, “You look at her as a dying system. I see a human being. Her life has value, not because of how much she can offer, but there is value in her life.”

“Our value,” Cathy says, “is not in our doing, but in our being.” Doerflinger agrees, and emphasizes that “every life is a gift. Particular treatments may be a burden; no one’s life should be dismissed as a burden.”

He says that human life is “a great good, worthy of respect. At the same time, it is not our ultimate good, which lies in our union with God and each other in eternity. We owe to all our loved ones the kind of care that fully respects their dignity as persons, without insisting on every possible means for prolonging life even if it may impose serious risks and burdens on a dying patient. Within these basic guidelines, there is a great deal of room for making personal decisions we think are best for those we love.”

Because of this latitude, a living will is not recommended for Catholics. Legal documents of this kind cannot take into account specific, unpredictable circumstances that may occur. Instead, Catholic ethicists recommend drawing up an advance directive with a durable power of attorney or healthcare proxy. A trusted spokesman is appointed to make medical decisions that adhere to Church teaching.

Caregivers should do their best to get as much information as possible from doctors and consult any priests, ethicists, or theologians available—and then to give over care to the doctors, praying that God will guide their hearts and hands.

Terri Duhon found relief in submitting to the guidance of the Church when a sudden stroke caused her mother to choke. Several delays left her on a ventilator, with no brain activity. “My husband and I couldn’t stand the thought of taking her off those machines. We wanted there to be a chance,” she says. But as the night wore on, she says, “We reached a point where it was an affront to her dignity to keep her on the machines.”

Duhon’s words can resonate with caregivers who make the choice either to extend life or to allow it to go: “I felt thankful that even though all of my emotion was against it, I had solid footing from the Church’s moral teaching. At least I wasn’t making the decision on my own.”

Adamkiewicz agrees. “It’s so terrifying and frustrating in a hospital,” she remembers. “I can’t imagine going through it without having our faith as our touchstone during those moments of fear.”

 *********

End of life resources

Ethical and Religious Directives for Catholic Healthcare Services (from the USCCB)

Evangelium Vitae

Pope John Paul II, To the Congress on Life-Sustaining Treatments and Vegetative State, 20 March 2004 

NCBCenter.org provides samples of an advance directive with durable power of attorney or healthcare proxy.

This article was originally published in Catholic Digest in 2013.

What the Catholic Church teaches about care for the dying

“Death with dignity” laws are both sensible and compassionate; religious prohibitions of suicide are both emotional and cruel.

Too often, that’s how the narrative goes when we discuss end-of-life issues and the laws surrounding them. Secular folks claim that, when Catholics and others protest against legalized suicide and euthanasia, our arguments are based in emotion, passion, or even a sadistic appetite for pain and suffering.

On the contrary, the Catholic Church’s teachings are both consistent and compassionate.

In light of recent discussions of Supreme Court nominee Neil Gorsuch and his views on assisted suicide and euthanasia, and in light of the story of a Dutch doctor who directed family members to hold down a struggling old woman so he could carry out her “assisted suicide,” I’m sharing again this article from 2013. The research I did for it corrected many of my own misconceptions about what it means to be pro-life at the end of life.

 

***

“Technology runs amok without ethics,” says Tammy Ruiz, a Catholic nurse who provides end-of-life care for newborns. “Making sure ethics keeps up with technology is one of the major focuses of my world.”

How do Catholics like Ruiz honor the life and dignity of patients, without playing God—either by giving too much care, or not enough?

Cathy Adamkiewicz had to find that balance when she signed the papers to remove her four-month-old daughter from life support. The child’s bodily systems were failing, and she would not have survived the heart transplant she needed. She had been sedated and on a respirator for most of her life. Off the machines, Adamkiewicz says, “She died peacefully in my husband’s arms. It was a joyful day.”

“To be pro-life,” Adamkiewicz explains, “does not mean you have to extend life forever, push it, or give every type of treatment.”

Many believe that the Church teaches we must prolong human life by any means available, but this is not so. According to the Catechism of the Catholic Church, “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of “over-zealous” treatment” (CCC, 2278).

Does this mean that the Church accepts euthanasia or physician-assisted suicide—that we may end a life to relieve suffering or because we think someone’s “quality of life” is too poor? No. The Catechism continues: “One does not will to cause death; one’s inability to impede it is merely accepted” (CCC, 2278).

Richard Doerflinger, associate director of Pro-Life Activities at the USCCB, explains that caregivers must ask, “What good can this treatment do for this person I love? What harm can it do to him or her? This is what Catholic theology calls ‘weighing the benefits and burdens of a treatment.’ If the benefit outweighs the burden, in your judgment, you should request the treatment; otherwise, it would be seen as morally optional.”

Palliative care is also legitimate, even if it may hasten death—as long as the goal is to alleviate suffering.

But how are we to judge when the burdens outweigh the benefits?

Some decisions are black and white: We must not do anything, or fail to do anything, with the goal of bringing about or hastening death. “An act or omission which, of itself or by intention, causes death in order to eliminate suffering constitutes a murder gravely contrary to the dignity of the human person and to the respect due to the living God, his Creator (CCC, 2277).

The dehydration death of Terry Schiavo in 2005 was murder, because Schiavo was not dying. Withdrawing food and water had the direct goal of killing her.

But if a man is dying of inoperable cancer and no longer wishes to eat or drink, or his body can no longer process nutrition, withdrawing food and water from him might be ethical and merciful. He is already moving toward death, and there is no reason to prolong his suffering.

Moral Obligations

Our moral obligations are not always obvious. Laura Malnight struggled with doubt and fear as she contemplated the future of her tiny newborn quadruplets. Two of them had pneumonia.

“It was horrible to watch them go through what they had to go through to live, being resuscitated over and over again,” Malnight says.

One baby was especially sick and had suffered brain damage. The doctors who had pushed her to do “selective reduction” while she was pregnant now urged her to stop trying to keep her son alive. “They said we were making a horrible mistake, and they painted a terrible picture of what his life would be like in an institution,” Malnight says.

Exhausted and overwhelmed, Malnight was not able to get a clear answer about the most ethical choice for her children.

Everyone told her, “The baby will declare himself,” signaling whether he’s meant to live or die. “But,” says Malnight, “my only experience with motherhood was with these babies, in their isolettes. The thing was, we would put our hands over our son and he would open his eyes, his breathing would calm.”

“We just kind of muddled through,” she says. Her quadruplets are now 13 years old, and her son, while blind and brain-damaged, is a delightful and irreplaceable child.

Doerflinger acknowledges Malnight’s struggle: “Often there is no one right or wrong answer, but just an answer you think is best for your loved one in this particular situation, taking into account that patient’s own perspective and his or her ability to tolerate the burdens of treatment.”

The key, says Cathy Adamkiewicz, is “not to put our human parameters on the purpose of a human life.”

When she got her infant daughter’s prognosis from the neurologist, she told him, “You look at her as a dying system. I see a human being. Her life has value, not because of how much she can offer, but there is value in her life.”

“Our value,” Cathy says, “is not in our doing, but in our being.” Doerflinger agrees, and emphasizes that “every life is a gift. Particular treatments may be a burden; no one’s life should be dismissed as a burden.”

He says that human life is “a great good, worthy of respect. At the same time, it is not our ultimate good, which lies in our union with God and each other in eternity. We owe to all our loved ones the kind of care that fully respects their dignity as persons, without insisting on every possible means for prolonging life even if it may impose serious risks and burdens on a dying patient. Within these basic guidelines, there is a great deal of room for making personal decisions we think are best for those we love.”

Because of this latitude, a living will is not recommended for Catholics. Legal documents of this kind cannot take into account specific, unpredictable circumstances that may occur. Instead, Catholic ethicists recommend drawing up an advance directive with a durable power of attorney or healthcare proxy. A trusted spokesman is appointed to make medical decisions that adhere to Church teaching.

Caregivers should do their best to get as much information as possible from doctors and consult any priests, ethicists, or theologians available—and then to give over care to the doctors, praying that God will guide their hearts and hands.

Terri Duhon found relief in submitting to the guidance of the Church when a sudden stroke caused her mother to choke. Several delays left her on a ventilator, with no brain activity. “My husband and I couldn’t stand the thought of taking her off those machines. We wanted there to be a chance,” she says. But as the night wore on, she says, “We reached a point where it was an affront to her dignity to keep her on the machines.”

Duhon’s words can resonate with caregivers who make the choice either to extend life or to allow it to go: “I felt thankful that even though all of my emotion was against it, I had solid footing from the Church’s moral teaching. At least I wasn’t making the decision on my own.”

Adamkiewicz agrees. “It’s so terrifying and frustrating in a hospital,” she remembers. “I can’t imagine going through it without having our faith as our touchstone during those moments of fear.”

 *********

End of life resources

 

Ethical and Religious Directives for Catholic Healthcare Services (from the USCCB)

Evangelium Vitae

Pope John Paul II, To the Congress on Life-Sustaining Treatments and Vegetative State, 20 March 2004 

NCBCenter.org provides samples of an advance directive with durable power of attorney or healthcare proxy.

This article was originally published in Catholic Digest in 2013.

Pro-life Even at the End of Life: What the Catholic Church Teaches about Care for the Dying

End_of_life_(2967585466)

The Catholic Church has a consistent, compassionate approach to end-of-life issues, but many Catholics don’t know what the Church actually teaches. As a result, doctors, hospice care workers, and the guardians of patients in distress are branded “murderers” even when they’re doing their best to care for the sick and dying in a loving, responsible, and ethical way. 

I wrote this article for Catholic Digest in 2013.  I’m reprinting it today in light of recent conversationg surrounding Baby Jake and the court’s decisions about his future medical care.

Pro-Life Even at the End of Life

“Technology runs amok without ethics,” says Tammy Ruiz, a Catholic nurse who provides end-of-life care for newborns. “Making sure ethics keeps up with technology is one of the major focuses of my world.”

How do Catholics like Ruiz honor the life and dignity of patients, without playing God—either by giving too much care, or not enough?

Cathy Adamkiewicz had to find that balance when she signed the papers to remove her four-month-old daughter from life support. The child’s bodily systems were failing, and she would not have survived the heart transplant she needed. She had been sedated and on a respirator for most of her life. Off the machines, Adamkiewicz says, “She died peacefully in my husband’s arms. It was a joyful day.”

“To be pro-life,” Adamkiewicz explains, “does not mean you have to extend life forever, push it, or give every type of treatment.”

Many believe that the Church teaches we must prolong human life by any means available, but this is not so. According to the Catechism of the Catholic Church, “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of “over-zealous” treatment” (CCC, 2278).

Does this mean that the Church accepts euthanasia or physician-assisted suicide—that we may end a life to relieve suffering or because we think someone’s “quality of life” is too poor? No. The Catechism continues: “One does not will to cause death; one’s inability to impede it is merely accepted” (CCC, 2278).

Richard Doerflinger, associate director of Pro-Life Activities at the USCCB, explains that caregivers must ask, “What good can this treatment do for this person I love? What harm can it do to him or her? This is what Catholic theology calls ‘weighing the benefits and burdens of a treatment.’ If the benefit outweighs the burden, in your judgment, you should request the treatment; otherwise, it would be seen as morally optional.”

Palliative care is also legitimate, even if it may hasten death—as long as the goal is to alleviate suffering.

But how are we to judge when the burdens outweigh the benefits?

Some decisions are black and white: We must not do anything, or fail to do anything, with the goal of bringing about or hastening death. “An act or omission which, of itself or by intention, causes death in order to eliminate suffering constitutes a murder gravely contrary to the dignity of the human person and to the respect due to the living God, his Creator (CCC, 2277).

The dehydration death of Terry Schiavo in 2005 was murder, because Schiavo was not dying. Withdrawing food and water had the direct goal of killing her.

But if a man is dying of inoperable cancer and no longer wishes to eat or drink, or his body can no longer process nutrition, withdrawing food and water from him might be ethical and merciful. He is already moving toward death, and there is no reason to prolong his suffering.

Moral Obligations

Our moral obligations are not always obvious. Laura Malnight struggled with doubt and fear as she contemplated the future of her tiny newborn quadruplets. Two of them had pneumonia.

“It was horrible to watch them go through what they had to go through to live, being resuscitated over and over again,” Malnight says.

One baby was especially sick and had suffered brain damage. The doctors who had pushed her to do “selective reduction” while she was pregnant now urged her to stop trying to keep her son alive. “They said we were making a horrible mistake, and they painted a terrible picture of what his life would be like in an institution,” Malnight says.

Exhausted and overwhelmed, Malnight was not able to get a clear answer about the most ethical choice for her children.

Everyone told her, “The baby will declare himself,” signaling whether he’s meant to live or die. “But,” says Malnight, “my only experience with motherhood was with these babies, in their isolettes. The thing was, we would put our hands over our son and he would open his eyes, his breathing would calm.”

“We just kind of muddled through,” she says. Her quadruplets are now 13 years old, and her son, while blind and brain-damaged, is a delightful and irreplaceable child.

Doerflinger acknowledges Malnight’s struggle: “Often there is no one right or wrong answer, but just an answer you think is best for your loved one in this particular situation, taking into account that patient’s own perspective and his or her ability to tolerate the burdens of treatment.”

The key, says Cathy Adamkiewicz, is “not to put our human parameters on the purpose of a human life.”

When she got her infant daughter’s prognosis from the neurologist, she told him, “You look at her as a dying system. I see a human being. Her life has value, not because of how much she can offer, but there is value in her life.”

“Our value,” Cathy says, “is not in our doing, but in our being.” Doerflinger agrees, and emphasizes that “every life is a gift. Particular treatments may be a burden; no one’s life should be dismissed as a burden.”

He says that human life is “a great good, worthy of respect. At the same time, it is not our ultimate good, which lies in our union with God and each other in eternity. We owe to all our loved ones the kind of care that fully respects their dignity as persons, without insisting on every possible means for prolonging life even if it may impose serious risks and burdens on a dying patient. Within these basic guidelines, there is a great deal of room for making personal decisions we think are best for those we love.”

Because of this latitude, a living will is not recommended for Catholics. Legal documents of this kind cannot take into account specific, unpredictable circumstances that may occur. Instead, Catholic ethicists recommend drawing up an advance directive with a durable power of attorney or healthcare proxy. A trusted spokesman is appointed to make medical decisions that adhere to Church teaching.

Caregivers should do their best to get as much information as possible from doctors and consult any priests, ethicists, or theologians available—and then to give over care to the doctors, praying that God will guide their hearts and hands.

Terri Duhon found relief in submitting to the guidance of the Church when a sudden stroke caused her mother to choke. Several delays left her on a ventilator, with no brain activity. “My husband and I couldn’t stand the thought of taking her off those machines. We wanted there to be a chance,” she says. But as the night wore on, she says, “We reached a point where it was an affront to her dignity to keep her on the machines.”

Duhon’s words can resonate with caregivers who make the choice either to extend life or to allow it to go: “I felt thankful that even though all of my emotion was against it, I had solid footing from the Church’s moral teaching. At least I wasn’t making the decision on my own.”

Adamkiewicz agrees. “It’s so terrifying and frustrating in a hospital,” she remembers. “I can’t imagine going through it without having our faith as our touchstone during those moments of fear.”

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End of life resources

 

Ethical and Religious Directives for Catholic Healthcare Services (from the USCCB)

Evangelium Vitae

Pope John Paul II, To the Congress on Life-Sustaining Treatments and Vegetative State, 20 March 2004 

NCBCenter.org provides samples of an advance directive with durable power of attorney or healthcare proxy.

This article was originally published in Catholic Digest in 2013.

Good reminder about the Jahi McMath case

No one will argue that what happened to Jahi McMath isn’t a tragedy. But, John Di Camillo of the National Catholic Bioethics Center reminds us, it may not be the cut-and-dry case of a hard-hearted hospital wedded to the culture of death that some reports are making it out to be.

Jahi McMath went in for tonsil surgery and ended up being declared brain dead three days later, and there has been a legal struggle ever since, to determine whether or not she can be moved to another facility which will agree to continue keeping her on life support.  The whole story is horrible and heart-wrenching, and I can’t even begin to imagine what I would do if I were the parents of this girl.

But we, as readers, don’t know all the details of it.  In an interview with the Catholic News Agency, Di Camillo says:

“It’s not something that’s simply a clear-cut, back-and-white case that we can, from the outside, say we know what’s going on. Because we don’t,” he added.

So even though this is a highly emotional case, it’s important for Catholics not to make rash statements about the decisions of the people involved.  The other day, I almost commented somewhere that that the hospital probably wanted Jahi to die to cover up any evidence of malpractice during the surgery.  But that would have been a serious sin of detraction.  Not only do I not know the motives of the doctors involved, I do not have any specific medical information about the case.

Di Camillo stressed the need to know the facts of Jahi McMath’s case before making a moral judgment.

“Before even getting to the ethical considerations, the medical facts are an absolute priority,” he said. “If we have a medically clear and confirmed determination of death by these neurological criteria, then we’re dealing with a situation where the body is actually the corpse of the deceased of this young girl.”

“If we’re dealing with a case where the person is in fact brain damaged but still alive, then we have a whole different set of ethical criteria because we’re talking about a living human being who is worthy of  full respect and full treatment.”

Di Camillo reminds us that end-of-life decisions must be made on a case by case basis, and that “[l]ife support systems are sometimes ordinary means of treatment and sometimes disproportionate.”  He reminds us that the case is not truly similar to Terry Schiavo, because Schiavo was clearly not brain dead; her husband simply didn’t want her to be alive anymore.

I wrote an article for Catholic Digest exploring some of the dilemmas caregivers face when they have to make life or death choices about the people they love.  (The article includes some links for further reading on Catholic medical ethics, and a site that provides samples of an advance directive with durable power of attorney or healthcare proxy.)

The Church does not, as many people imagine, insist that we squeeze the last possibility out of every beating heart.  I do not mean to imply that that’s what Jahi McMath’s parents are doing! The point is, we simply do not know.  It is appropriate to pray for the family, and it is appropriate to have public and private conversations about what the Church teaches about end of life medical decisions.  But it is wrong to assume we know what is going on in this particular case.

The only thing I’m not clear about is whether it ought ever to be up to hospitals to make the decision about whether to remove life support, assuming that the patient truly is past saving. I know that there are cases in which a person really is truly dead, and is being kept artificially “alive” because the family can’t bear to say goodbye.  In those cases, should the hospital be able to make the decision for them?  I don’t know.

 

Catholic Digest: Pro-life Even at the End of Life

Oops, just realized I have a second article in the latest edition of Catholic Digest.  Do get your hands on this one if you can!  The strength and clarity of the people I interviewed is just astonishing. I wish I had had enough space to include all of what they had to say about making end-of-life decisions for the people they love.

I wrote about the experience of tackling this harrowing subject in a post called “Bright Wings.”  I’m just going to reprint it here (it ran first in the Register on Jan. 17, 2013), because it dovetails so nicely with Thursday’s Bigger on the Inside post.

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I’m writing an article for Catholic Digest about end-of-life issues.  To be more precise, I’m finally writing this article.  I was putting it off because (a) I’m lazy, (b) it involved conducting interviews, and I get very nervous talking on the phone, (c) it seemed like a depressing topic, (d) I was petrified of getting some detail wrong, leading readers astray, and causing the needless deaths of countless helpless grandmas, and most of all because (e) I was scared.  Scared of finding out exactly what the Church actually teaches.

I knew the secular ideas of Church teaching were wrong.  I knew that the Church is not cruel or heartless, and I knew that her teachings are derived from hundreds of years of rigorous scholarship, and are guided by the Holy Spirit.  I knew that sometimes people suffer needlessly because people misunderstand Church teaching.

But I also knew, without even realizing I was thinking this way, that what God wanted from us was awful.  Or, in the older sense, awe-ful.  Scary, hard, intractable, too much to bear.  Without realizing I was thinking this way, I thought I’d have to massage the facts into something more palatable for the general public, so as not to scare people away from fidelity to the Church.

Yep, I thought God would need my help.

I did five interviews in three days, I read the catechism, I looked up the relevant documents, and I got some clarification from Rich Doerflinger.  I did my research with the same internal posture as I take on externally when I’m watching a horror movie that everybody says is really, really good and I shouldn’t miss:  I was tense, defensive, ready to cover my eyes as the hero slo-o-o-o-owly opens the door to see what’s inside the creepy old shack in the woods.

So, I opened the door. I found out what the Church really says about end-of-life issues — how to make the decisions, how to care for people, how to do your best to strike the balance between letting technology do its job and letting nature take its course.

Guess what the Church teaches?  God loves you.  He loves life.  He has life to share, and He shares the light of His eternal life by sending the Church as a support when we are weak.  He sends the Holy Spirit into the ICU and the NICU with the respirators and dialysis machines, into the womb that holds the anencephalic child, into the hospice room with the 80-pound man who no longer wants or needs to eat.

And because He is a God who loves, He is a God who grieves — not only for the sick and the dying, but for the living, who have to carry the burden of their decisions after sitting up night after night without sleeping, without a change of clothes, without knowing clearly if they are causing pain or bringing relief to the ones they love.  That every life is valuable, and that includes the lives of caregivers.  He enlightens the minds of nurses.  He strengthens the hearts of parents.  He brings clarity to grown children.  And He grieves.

What I learned is that the Church teaches, “God loves you, God loves you, God loves you.”  Always and forever, in the darkness of doubt, and in the light of the truth.  This is what is at the heart of all the teachings of the Church; this is what we will always see when we force ourselves to uncover our eyes and watch the story as it unfolds:

And though the last lights off the black West went
Oh, morning, at the brown brink eastward, springs —
Because the Holy Ghost over the bent
World broods with warm breast and with ah! bright wings.