Since I was asked to write a weekly blog posting for Desiring God, some interesting emails have come into the office. I haven’t been able to respond to all of them, but I received one that was so serious I decided I needed to attempt a response, even though I think it was ‘above my pay scale.’
I am trusting that God gave me something, but the question still makes my heart race and palms moist.
In essence, the emailer asked if he was wrong to ask his family to withhold food from him if he became incapacitated sometime in the future.
What would you say to that question?
Here is my attempt at an answer:
As long as you let me speak solely for myself and not for Desiring God, I’ll take a try at a response.
There is a difference between end-of-life issues and issues related to lifelong disability, but I would suggest we be very careful in both cases.
And I strongly suggest that issues like this really need to be hashed out personally in the presence of other mature Christians, with Bibles open and a humble desire to pray for and receive God’s wisdom.
But I do want to raise a caution.
As you can probably tell from my recent posts, I am very concerned about our culture’s view of people with disabilities as represented in the rate of abortion of children identified with disabilities in the womb. But we see echoes of that thinking elsewhere – even in your own statement about not wanting to live if you can’t feed yourself. I’m assuming you mean that you are so incapacitated that you cannot perform any duties that right now are important to your functioning – feeding, toileting, communicating, living independently, etc.
Does (being incapacitated) make you less human? Does that make boys like my son less human to you?
My guess is that you would answer ‘no’ immediately to the second question but might pause before answering the first. I pause as well – I’m as American, middle-class, and independent as you probably are, which means even the thought of being incapacitated is revolting.
But our lives are not our own. The classic Biblical text used to address abortion is Psalm 139:13-15, but if we continue to verse 16 we see this:
Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. (Psalm 139:16 ESV)God himself knows our days, even the days ahead that would frighten us because of things like loss of capacity. Do we believe he is sovereign over those days as well? Do we believe he will help us in those days?And in 1 Corinthians we see this:
Or do you not know that your body is a temple of the Holy Spirit within you, whom you have from God? You are not your own, for you were bought with a price. So glorify God in your body. (1 Corinthians 6:19-20 ESV)So, asking our families to withhold what is natural to our existence – such as food and water – rather than being a helpful thing for yourself or your family could be an expression of sinful self-determination. It could also rob them of a life-changing opportunity to love and care for you, trusting God to supply all their needs and make much of Jesus in the midst of really hard circumstances.
Dementia is a horrible thing, as is cancer, blindness, and autism. The creation is groaning. Yet, God is sovereign over all things – and we can make Jesus look even more beautiful as we wait:
For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. For the creation waits with eager longing for the revealing of the sons of God. For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God. For we know that the whole creation has been groaning together in the pains of childbirth until now. And not only the creation, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies. For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience. (Romans 8:18-25 ESV)We haven’t met personally, and I know what I’ve written could come off as arrogant and judgmental. I pray it doesn’t land on you like that but rather as one brother to another who wants to understand this life in light of the Word of God. These are tremendously important questions.
Someday, we will both see clearly! May Jesus come back soon!
John
The Works of God 
I was a little encouraged by this post – although not incapacitated i often beg God for death (too afraid to attempt anything on my own to help Him) – i believe that the keys to life and death are in His hand and that He chooses the time of my death (again often “wishing” His timing would be sooner rather than later) but this piston reminded me of my sin of lack of faith! Christ often rebuked His disciples of being without or at least with little faith – i have slowly come to realize that suicide is one of many statements to God that says “i don’t trust/believe You – and therefore my choice to end my life is a far superior decision to Yours in keeping me alive” – or “i don’t believe/have faith that (a) You can take care of me (b) You have a plan…even for ‘this’ (c) You can be glorified in my situation (d) You really are in control of things, let alone my life”
Life is difficult – LIVING is even harder – but if God really IS Who He says He is – author & finisher, controller & sustainer, etc – like the forefathers in scripture who eased up royally every time they tried to give Him a hand – i suppose it wouldn’t be uncalled for to at least TRY to see if God can be God?!?
I thought this was a beautiful, insightful, and wise response. God is at work in all of life’s circumstances. Oh that we would see it.
John:
As someone who has lived through the horrific reality of having to make choices like the one cited above, I would like to respond. Our story, in brief, is this. We moved both of my parents into our home 16 years ago. Within three months, my dad was diagnosed with a terminal kidney disease. For nine months, we watched him die and did everything we could to keep him alive. There was dementia…lots of it. He experienced declining physical ability to care for his own needs. In short, life got really hard really fast. At the time, we had a young family of our own and we were homeschooling. My Mama was Daddy’s primary caregiver.
Toward the end of the “dying year”, it became clear that Mama might go before Daddy. She wasn’t a spring chicken at the time (78 years old) and the demands of caring for one in his condition almost killed her. Because of some hasty decisions that had been made when the move occurred, they had no insurance and Medicare would only cover 5 days in a hospice facility. Toward the end, he got very combative and at the very end, he didn’t hold still for more than five minutes at a time AROUND THE CLOCK. Exhaustion threatened to do all of us in.
We did what we believed was the Biblical thing to do. We did everything in our power to minister to his needs until the Lord chose to take him home and we would do the same thing today if put in the same circumstance. Was it hard? Incredibly so. There were many times we thought we might not make it through his “dying year.” Could we understand the choices others sometimes make to withhold food and water? Absolutely. WE just couldn’t make those kinds of decisions, knowing that as you have quoted above, God is the taker and giver of life and we have no right to interfere with His designs. As it was, when the Lord chose to take him home, it was very sudden and we never saw it coming. We were grateful and relieved (just being totally honest here). The pain of him going was mitigated by our own desires to begin to feel human again.
Did the Lord uphold us while going through that awful, awful year? He did. We’re none the worse for wear. Could we have done anything different? I don’t think so. Christ has called each of us to walk a difficult road at some time in the midst of our busy lives. This was our year. Could the body of Christ helped us more or better during that year? Absolutely. And I think this is something that bears repeating.
When someone is sick and/or dying in your home, you need help. Most of the time, the folks that need help don’t want to ask, or if they do ask, they’re greeted with blank stares and responses like “Well, if only I could figure out how to fit it into my own busy schedule.” Cut it out, church! We are called to be the BODY of Christ and that means clearing out our schedules because someone else IN OUR BODY is in the midst of an emergency that requires that WE come alongside. We don’t ask questions. We don’t make them feel guilty for asking. We just lock arms and get in step because that’s what GOD WANTS US TO DO. He doesn’t want us waiting around for a letter from on high that says, “Get involved.” He sent that missive many years ago when he told us to “Weep with those who weep” and “Carry the burdens of those who are weak and thus fulfill the law of Christ” (Gal 6:2). Christlike love constrains us to walk alongside those in need.
Just as the body is constrained to walk alongside those in need (the families caring for loved ones), so the ones walking alongside are constrained to continue in grace. Gal. 6:2 is for all of us. Is it tough? You’d better believe it’s tough. There were times I thought my head was going under for the last time (to use a drowning metaphor) but God provided. He met our needs. He enabled us to persevere ’til the very end. And so will He do for every caregiver who stretches out his or her hand to love a hurting brother, sister, father, mother, child…..to the edge of the grave.
May those who come behind us find us faithful…to the END. And faithfulness to persevere in this manner comes ONLY through the grace of God.
My response is really for Jennifer H. Thank you so much for sharing your story. My parents too are ill and I am doing my best to care for them and balance my young family as well. At times it is incredibly difficult, but I can see God’s hand in so many things. You are absolutely right about the difference the body of Christ can make when we are struggling! At times I have received no help at all and at others I have received help that has been such an incredible blessing that the relief and sense of love that rushed through me nearly burst my heart. If you don’t know what to do to help someone make them a meal. I know that going home after an exhausting day of helping my parents and making sure they were fed to a house with no dinner, no rapidly fixable meals and with no time to shop made me feel like a horrible wife and mother. One such day I opened my refrigerator and dinner was there! Friends from my mother’s group had decided to help me out and had dropped off food. I stood in my kitchen and just cried. If nobody is home you can leave everything in a cooler with ice and it will stay good for hours. Leave a note in there (so your friend knows who to get the cooler and dishes back to–it can be harder than you think!) and you will have been a blessing.
Bless YOU, Star, for caring for your parents. You’re doing the right thing and the Lord will reward your efforts with a “Well done, thou good and FAITHFUL servant” when at last you see Him face to face.
I love your very practical suggestion re: meals. (And I love your mother’s group! Bless them for recognizing the need and stepping up to meet the need!)
You, my dear sister in Christ, are not a horrible wife and mother, although at times I know that it feels like it. Young mothers with aging parents have an extra ball to balance and it is just plain difficult. My husband and I will add you to our daily prayer list as you labor to be the hands and heart of Christ to your Mom and Dad.
And do I live anywhere near you? We’re in Colorado. I could bring a meal too….
Jen
This was most beautifully written, in love and concern for another, having worked in health care for over 26 years, and have seen and experienced some horrible, sad and painful death and dying situations, in emergency rooms, critical care.and hospital care rooms. (Medical/surgical)..that being said life is precious and as you wrote God given, and respected, we too are required to value all of life, so to withhold basis human needs as far as food and water. Personally I could not do that, but to prolong pain and anguish with (artificial means) drugs and machines I could in a moment agree with that, as I have been witness to that and family members grieve just as much in all cases. I have seen hundreds die before my eyes. Some die in peace and some die fighting to the bitter end. The one who died in peace were believers as the chart would reflect a “religion” if you will, and sadly when checking charts on those who fought the chart would read “no preference” so for me there IS a correlation to one who might believe in God and one who does not. My opinion only and this is not science on human perceptions to what I have witnessed and observed over the years. I now I went off from the subject quite a bit, but I believe God is most glorified when we place all of who we are and die to our fears so that even in the moments when we are dying, HE can become our life and joy, we must in faith believe HE IS and will only love us in death and dying as HE loves us in life. Peace, grace and joy be yours and might GOD be glorified in us as we live for HIM as we reach out in HIS love towards others.
Thank you for this very clearly and lovingly written response. It gives us much to think about and pray about as we all face uncertain futures.
I have over 50 years as a bedside nurse…. I agree not to purposely without food and fluid, give what the “patient” is able to take, but I do not agree with artificial feeding/IV’s when the resident is terminal. I like Joni Erickson Tada’s comment, “Are you prolonging life or prolonging death?” Very good question! The note above is important. Families often make decisions, who knows, because of guilt or something else, not what the “patient” would want. A Do Not Resuscitate order is very appropriate for more people than families want. I sat at the bedside of my own parents while the body died…… and was blessed each time knowing I had done all I could do for their comfort.
Thank you for these pastoral comments.
As a Family Physician involved in end-of-life counsel on a weekly basis, I would simply like to point out that deciding not to use artificial hydration and nutrition through tubes and intravenous lines should NOT be considered in the same category as not allowing a loved one to eat or drink.
They really are very different things. Most Hospice Nurses with whom I work would agree and often assist their patients with sips of water and what food they can eat in their final moments, while correctly advising that artificial tubes and lines would be an entirely different matter, causing dozens of medical problems (pulmonary edema, aspiration pneumonia, etc) and often making the dying process much more painful.
These are not easy issues. Thanks for posting and for allowing comments.
I so agree with you, Dr. John. Artificial hydration and nutrition through tubes are, imho, prolonging death (as in the words of Joni E. Tada).
Love those kind hospice nurses….they’re wonderful!
Aren’t you sweet Jen! We are in NJ, so not near at all, but I appreciate your prayers and your sweet offer. Praise God my parents are in a good patch right now. Both are currently home and are once again able to do some basic things themselves. Mom has Leukaemia and Dad has severe lung damage from the Legionnaire’s Disease he contracted while visiting her in the hospital. What tends to happen is that one gets sick and the other gets so worn down trying to care for the other that they both end up sick.
And, Mr. Knight, thank you for your well thought out response. These issues are not easy, and your suggestion to go to the Bible and seek counsel of mature Christians is an excellent one for any difficult choice that must be made.
Thank you so much John for writing this with pulse racing and hands perspiring, God gave you insight into answering this question. My name is Lisa and I am a forty-nine year old married woman. I have three children, two with disabilities. My eight year old daughter is severly austistic. She is self injurning and fecal smearing. She rarely sleeps more than four or five hours in a twenty-four hour period. She is constant work, and I do mean constant work. I am terminally ill. I can no longer care for her the way I once did. We are low income. My husband has lost his job due to missing so much work to take care of our daughter when I can’t. We have no family to turn to for help. I am so happy!! God has blessed us by putting us in these circumstances. Never would I have drawn so near to Him. We have had to learn to be completely dependent upon Him. My children have grown up in a home of poverty, how richly blessed they are. They have seen our struggles and they have watched as we turn to God and wait upon Him. They have had the blessing of seeing the Bible come to life. God didn’t just preform miracles and take care of His people in the Bible times. They have gotten to see God take care of us again and again when it would look as there was noway out. And God never did things in the way we would have. He has displayed His working Hand in our lives again and again. My children know God. My children have Faith. How rich they are indeed. Not one thing on the face of this earth takes precedence over teaching them about God. School is secondary. Yet the good grades come because they do everything to their best ability because they do it for God. People have felt the freedom to make so many statements to us. They want to know why we don’t just put Ruth some where? They tell me I don’t even have a life. I have a life. I have it more abundantly, I have life, I have joy. My family knows God. My family knows we are safe in His Hands. We live it daily, and what a joy it is. We needed a new roof and had no money. We prayed and asked God for it. We invisioned Him putting it on someones heart to help us. He sent a hail storm. A very bad hail storm. It destroyed our roof, stripped the paint on our garage door and wood over hangs (that already were in desperate need of paint) and broke out two windows that leaked. When the hail storm came the children were frightened and more so when they thought their mother was losing her mind. When I saw the hail breaking through the windows and it sounded as if it might come through the ceiling I started praising the Lord. When it was over and we and our neighbors went outside to survey the damage they thought I was crazy too. They looked at their houses in horror and I was jumping up and down praising and thanking my God. We got our new roof our house painted and windows replaced without having a penny. This is only one story of MANY stories that God has preformed. When well meaning people ask us why we don’t put Ruth somewhere so the rest of the family can have a life one of the first things I ask them is “who would teach her about God and His ways”? God knows she is this way and could change that if He saw it as best. Our ways are not His ways. I can’t think like God and I can’t see like God. But I do trust Him and no matter what He sends our way my desire is to honor and glorify Him. We don’t have a life in the american dream way. We have so much more. We are not deceived by the trappings of things and entertainment. And sadly to say I know if God had not brought all these adversities upon us we would be. I never would have known Him in this way. I don’ know why we have been so blessed by Him to make us so dependent upon Him but I thank Him for it and truly, truly, truly mean it. I would not go back and change a thing. At one point I would. But to know Him in this way is worth everything! Rejoice when trouble comes your way, He is refining you. There have been a couple of times when I was slipping away, and I was shocked by my excitment. I knew I wasn’t afraid to die, but I didn’t know it would be so exciting. But why wouldn’t it for a christian. I will be where I have always belonged, with my Master. We are all His slaves really. We will all serve Him one day, be it in heaven or hell. He rules both worlds. Even now Saten cannot do one thing without God’s permission, he is also his slave, he just doesn’t serve Him willingly. I wouldn’t have missed Ruth for anything. God has a purpose for her. He gave her to us to bring up in the way of the Lord and love her, and love her we do! We almost did miss Ruth, but God intended for her to be. On my first ultrasound at five and a half weeks they told me my baby was dead and they would need to do a D & C. But God had other plans. Another long story. I did not get the D & C. There was a dead baby, and Ruth was hidden behind that baby. A week later we saw her with her little heart beating strong. My daughter, I thank God for her! God has actually saved Ruth three times, quite dramatically. Long stories. People want to know when God is going to heal her, surely He is going to use her. We think in such human terms. We never see God’s pictures. His plans, His purpose. Believe me, He is using her. Love life while he still leaves the breath of life in you, even if you are suffering and writhering in pain. Glorify His name. Suffer in honor just as Jesus did before us. Be a witness. Be the salt of the earth so that many will turn to Him and call Him Blessed. It is an honor to suffer for His glory. Trust Him. There is a reason for everything you go through here. Let Him bless you with trials. May God bless you all, let’s all stand and sing His praises her on earth just as though we were in heaven. Only He is worthy to receive Honor and Glory.
God bless you, sister.
“At that time the disciples came to Jesus, saying, ‘Who is the greatest in the kingdom of heaven?’ And calling to him a child, he put him in the midst of them….’See to it that you do not despise one of these little ones. For I tell you that in heaven their angels ALWAYS see the face of my Father who is in heaven.'”
Matt. 18:1-2; 10
I have to agree this is a difficult issue and frankly it’s above anybody’s pay scale, to paraphrase you.
If I may, I’d like to back up what you’re saying with a passage I cling to Matthew 25:31-46:
(partial of the passage):
Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’
I think you’d be hard pressed to pull the plug on someone and rationalize around the above passage. As difficult as it is to keep someone alive whom cannot function on their own, the rewards are eternal.
I do not envy your position in having to choose words to respond to the email, but I do think God granted discernment and wisdom so that you gave an insightful, and wise response. Thank you for sharing.
I think that there needs to make a distinction between end-stage disease processes and disabilities. We should not mix the two. On one hand, we should not prolong suffering in someone that is dying from a terminal disease by “doing everything” we can. Just because we can provide heroic measures doesn’t mean that we should. That is much different than supporting a person who has a life-long disability who may require for example, a feeding tube with food and water. In both cases, the value of human life needs to be upheld. I straddle these two worlds as an ICU nurse who has worked in the area for 28 years and by caring for my youngest child who has severe disabilities. If my child with disabilities crosses into the area where he is dying and treatment is futile, I pray that God will give me the strength and grace to honor Him and cradle my child in my arms as he crosses over into eternity.
I think the most important thing you said, John, was this: “It could also rob them of a life-changing opportunity to love and care for you, trusting God to supply all their needs and make much of Jesus in the midst of really hard circumstances.” We have NO IDEA what God plans to do in the lives of our caregivers through our suffering. We persist in a “it’s all about me” mentality: “If I was in that bad shape, I would want to die.” But it’s not all about me. It’s always about God, and what He intends to do in the lives of others through me and around me. Don’t rob Him of the opportunity to use you until He calls you home.
Knowing God’s Word and having His Holy Spirit has enabled me to endure hardship as a good soldier. When severely wounded by life, in my weakness, I begged Him to take me home. Each time, I was admonished to choose life. When I was too weak to desire life; like a lamb he lifted me and carried me until I was strong enough to follow down the path He had prepared for me. His Word and Body met my needs through the Holy Spirit.
There are so many examples; here is one. As a child I had fainted in my spirit because of the sexual, physical, and mental abuses I endured. Yet, one day, I cried out to God, “Why did you make me?” “I wish I had never been born.” Then, one day, while obeying my mother to take out the trash, I found the gospel of John. I was just eight or nine years old. I was required to burn the trash. I only discovered this “Little Bible”–it fit snuggly in my hand, after the flames were leaping toward it. I had prayed earlier for a little Bible, thinking God could whispher his answer to me rather than yell at the top of his lungs as the country preacher did. I fished the little Bible out of the fire, though bangs, eyebrows, eyelashes and hair on my arms were burnt. I will never forget the sweetness of those words as I read them hidden behind a tree in hopes that I would not be seen and caught reading something I was suppose to have thrown away. “In the begining was the word, and the word was with God, and the Word was God, the same was in the beginning with God.” (King James JOhn 1:1) I continued reading and learned that the “Life was in Jesus and was the Light of men” and that I was not alone in not understanding the “why” as it also stated that the Light shone into darkness and darkness comprehended it not, John 1:5. I read hungarily, and learned that Jesus had a purpose for coming here to reach me with his LOVE and I then began to understand the “why.” Those that abused were the darkness that did not understand His LIght and I then prayed/asked for His Light and strength to be kind to those that abused me. He gave me Himself (His Word and His Holy Spirit) as a resource for all that I needed then and would need later as life would progress.
Each time I have fainted in this life, He has been faithful to sustain and comfort me, through His Word, His Body, and by His Holy Spirit. I agree that physical life is His gift to each of us as is the gift of eternal life. At the end of life (I have faced this, too, He will make His preference known in the circumstance, if we allow His direction. I oppose prolonging death, but do support dignity in dying with pain managment.
Thank you, john for your words. I really appreciated especially what you wrote about how God could use a patient’s suffering in the life of the caregiver. My husband died at the age of 27 after a two year battle with tongue cancer. Our children were 2 and 4 at the time. As Andrew’s caregiver, I so can relate to what jennifer h and star wrote -about the incredible exhaustion that could leave one at one’s own deathbed. At the same time, I am so grateful for the privilege the Lord gave me of taking care of my husband. I got to express and exercise a lifetime of love concentrated in a short period of time by taking care of him. In his last days, andrew said he felt like he was a burden to me. And I said “Don’t ever believe that lie from the devil. It’s my JOY to take care of you. This is what the Lord called me to. I’m your wife. And God has given me so much joy in fulfilling my calling.” Yes, I did feel like I was literally going to die myself, I was so burnt out, but it was simultaneously my joy. When I didn’t feel I had strength anymore, and so desperately longed to give myself wholeheartedly to my children, and couldn’t bear for andrew to suffer any longer (as he hadn’t been able to eat through his mouth for 11 months and the tumor had made a hole from the outside of his neck all the way to his airway, so that he would wake up feeling like he was drowning), I cried out to God alone in the car for the 3rd time, and that night the Lord made him unconscious and he died shortly after. So the Lord did take him in His mercy toward us, but it was in His timing and His choosing. Suffering alongside your spouse like that, while excruciating to say the least, is a privilege. You experience a very special intimacy. And I am grateful.
Dear Grace Mark:
Hugs to you, dear sister in the Lord. What a beautiful, beautiful testimony to God’s sustaining grace!
Jen
Thank you for that. It really needs to be said and I feel you did it in a humble and gracious way.
I also appreciate that you prefaced it with time in the word and prayer when making those decisions. The importance of that cannot be overstated and must not be assumed. Thank you!