by Between Life
Appendix 1
Summary Chart of Organ-Supporting Measures
Intervention
Organ System(s) Supported
When It Helps
When It Hurts
Notes
CPR
Brain and heart during cardiac arrest
Immediately reversible causes of cardiac arrest, especially abnormal ventricular rhythms.
Cardiac arrest not related to a treatable heart rhythm; end-stage disease.
Causes rib fractures in most cases.
Prolonged CPR associated with low survival and high incidence of brain injury.
Defibrillation
Electrical system of the heart
Life saving in lethal ventricular rhythms and some atrial arrhythmias.
Does not inflict pain during cardiac arrest, but can be painful in patients with less severe rhythms who are awake.
Defibrillation significantly improves survival.
Endotracheal Intubation
Airway
Required to connect to a ventilator in respiratory failure; protects the airway in the event of unconsciousness, airway obstruction.
In chronic, debilitating, or terminal disease, endotracheal intubation and mechanical ventilation can prolong dying.
Associated with injury to the vocal cords and windpipe with prolonged use.
Increases risk for pneumonia.
Very uncomfortable; requires sedation to tolerate.
Mechanical Ventilation
Lungs
Life saving in respiratory distress, particularly for reversible causes: treatable pneumonia, fluid in the lungs from kidney or heart failure.
In chronic, debilitating, or terminal disease, endotracheal intubation and mechanical ventilation can prolong dying.
Prolonged use weakens respiratory muscles, leading to ventilator dependence.
Associated with pneumonia.
Often requires sedation to tolerate.
Tracheostomy
Airway, lungs
Facilitates weaning from the ventilator, and avoids injury to the vocal cords and windpipe from prolonged intubation.
Might signal a need for long-term ventilator dependence.
The procedure itself carries risk of injury and bleeding.
Very helpful and temporary when respiratory failure is recoverable.
If no recovery is anticipated, indicates long-term ventilator dependence.
Noninvasive Positive Pressure Ventilation (BiPAP)
Lungs
Provides support in reversible respiratory failure in conscious patients.
Not appropriate for severe or long-term respiratory failure and associated with increased mortality in such cases.
Avoids an endotracheal tube.
Patients are awake and interactive.
Claustrophobia may occur.
Vasopressor and Inotropic Medications
Cardiovascular system (heart, blood pressure)
Supports the heart and blood pressure in reversible causes of shock.
High doses of pressors can restrict blood flow to the limbs and bowel, causing death of these tissues.
Inotropes can cause fatal heart rhythms at high doses.
In unrecoverable critical illness, as death nears, doses lose their efficacy.
A steady dose of vasopressor may not mean adequate delivery of oxygen to the organs.
Central and Arterial Lines
Cardiovascular system (for monitoring)
Allows for monitoring of vital signs continuously and administration of powerful medications. Ubiquitous in the ICU.
Lines are associated with clotting, bloodstream infection, and complications from insertion, including vessel injury and lung collapse.
Ubiquitous in the ICU but an important source of hospital-acquired infections
Artificially Administered Nutrition
Gastrointestinal system
Vital for maintaining nutrition when illness prevents normal eating.
Near death, tube feeds can cause nausea, vomiting, bloating, and cramping as the gut shuts down.
In end-stage dementia, tube dislodgement and required restraints can worsen confusion and inflict suffering.
Long-term feeding through the gut requires surgical placement of a feeding tube.
If the gut cannot be fed through tubes due to disease, TPN can be infused through veins, although this carries risk of infection.
Dialysis
Kidneys
Allows survival with chronic kidney disease for as long as decades.
May significantly impair quality of life in end-stage illness.
Nephrologists offer guidelines recommending when to pursue dialysis.
Need for dialysis is a marker for severe debilitating illness, and should prompt discussions about advance care planning in general.
Appendix 2
Sample Advance Directive
Note: I offer the following as an example. When you formulate your own advance directive, I urge you to consider your unique medical history and the facets of life pivotal to your walk of faith. Please review chapter 12 carefully. My state of residence does not legally recognize living wills and officially uses only healthcare proxy and POLST forms. As a result, I have written my living will in free form. Other states, however, have templates with prompts that can be very helpful. Please refer to the websites listed in the Further Reading section for specific links.
Living Will for Kathryn L. Butler, MD
In the event that severe illness incapacitates me, I wish for my [chief surrogate] to direct decisions in my medical care on my behalf. Should catastrophe also incapacitate him, this responsibility should fall to [secondary surrogate].
As a follower of Jesus Christ, I aim to preserve God-given life when feasible but not to ignore his authority over the extent of my life or to chase after treatments that would thwart my ability to faithfully serve him. In general, I will pursue treatments that promise recovery but not those that prolong death or those that permanently eliminate my abilities to reason and communicate.
Goals for the End of Life
To serve God, I need to think, to reason, to pray, and to exchange ideas in fellowship with others.
I wish to be lucid enough to spend time in prayer, reading, and reflection at the end of life.
I yearn for life-giving fellowship with loved ones and with other believers.
I long to glorify God through the written word. Reading and writing are nourishment and air for me.
Any debilitating, terminal illness that would impair my ability to communicate is abhorrent to me. When I say “communicate,” I refer not to gestures but to the lively exchange of ideas.
I yearn for as much time as possible in the quiet of our wooded backyard; however, this is not essential so long as I am able to engage with others meaningfully.
I am willing to endure physical discomfort, dependence on others, and long-term ventilator dependence if I may still exchange ideas meaningfully.
I do not wish for aggressive, life-prolonging measures if they are futile or in the event of end-stage terminal illness, advanced dementia, or brain injury sufficiently severe that it eliminates my abilities to reason and communicate.
Specific Directives for Medical Care
Reversible Illness
In the event of potentially reversible life-threatening illness, I wish to be a FULL CODE and to receive all interventions to save my life, as long as recovery is possible, with the ultimate aim of returning home and seeking the goals listed above. Such measures include but are not limited to:
endotracheal intubation
mechanical ventilation
cardiopulmonary resuscitation
electrical defibrillation
dialysis
artificially administered nutrition
Limitations to Care
I consent to the above measures presuming they will enable my recovery from critica
l illness.
With regard to nonrecoverable illness, or partially recoverable illness with disability, I would accept aggressive measures if they could help me meet the goals listed above. In particular, I wish for prolongation of my life if I still possess my mental faculties and can interact meaningfully with others. I would accept long-term ventilator dependence, paralysis, dependence upon others for activities of daily living, and pain if I am still able to converse, write, and reason.
In contrast, I would not accept CPR, endotracheal intubation, mechanical ventilation, or defibrillation in the event of:
1. Nonrecoverable fatal illness.
2. Any illness or disability that permanently impairs my ability to communicate, including but not limited to coma, persistent vegetative state, and minimally conscious state.
3. Advanced dementia.
4. End-stage terminal illness with a life expectancy of six months or less.
I would be unwilling to accept dialysis or artificially administered nutrition for conditions (1) to (3) and would ask for friends, family, and caregivers to instead feed me by hand as I am able to tolerate. However, I would accept dialysis and artificially administered nutrition for condition (4), only if these measures would grant me more days spent in fellowship, prayer, and reflection, as listed above in my goals.
As a servant of Christ, I seek above all to serve him faithfully. My hope resides in his death and resurrection, for salvation and the forgiveness of sins. “The Lord is my rock and my fortress and my deliverer, my God, my rock, in whom I take refuge” (Ps. 18:2). This side of the cross, I have no fear of death but only joy in his saving work and in the life to come.
Appendix 3
Scripture Passages for Comfort
The Lord is my rock and my fortress and my deliverer,
my God, my rock, in whom I take refuge,
my shield, and the horn of my salvation, my stronghold. (Ps. 18:2)
Even though I walk through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me. (Ps. 23:4)
The Lord is near to the brokenhearted
and saves the crushed in spirit. (Ps. 34:18)
God is our refuge and strength,
a very present help in trouble.
Therefore we will not fear though the earth gives way,
though the mountains be moved into the heart of the sea,
though its waters roar and foam,
though the mountains tremble at its swelling. (Ps. 46:1–3)
But I am like a green olive tree
in the house of God.
I trust in the steadfast love of God
forever and ever. (Ps. 52:8)
You guide me with your counsel,
and afterward you will receive me to glory.
Whom have I in heaven but you?
And there is nothing on earth that I desire besides you.
My flesh and heart may fail,
but God is the strength of my heart and my portion forever. (Ps. 73:24–26)
I lift up my eyes to the hills.
From where does my help come?
My help comes from the Lord,
who made heaven and earth. (Ps. 121:1–2)
Jesus said to her, “I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, and everyone who lives and believes in me shall never die.” (John 11:25–26)
We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. (Rom. 5:3–5)
Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? As it is written, “For your sake we are being killed all the day long; we are regarded as sheep to be slaughtered.” No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. (Rom. 8:35–39)
So we do not lose heart. Thought our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. (2 Cor. 4:16–18)
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. (2 Cor. 12:9–10)
Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. (1 Pet. 1:3–5)
He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away. And he who was seated on the throne said, “Behold, I am making all things new.” (Rev. 21:4–5)
Glossary
acute respiratory distress syndrome (ARDS). A rapidly progressive buildup of fluid in the lungs due to damage of lung capillaries in critical illness.
advance care planning. Discussions and documentation aimed to clarify wishes at the end of life.
advance directive. A document outlining wishes for care at the end of life, with particular emphasis on organ-supporting technologies, and also for designation of a surrogate decision maker.
anaphylaxis. A severe allergic reaction that causes shock and difficulty breathing.
arrhythmia. An abnormal heart rhythm.
arteriovenous (AV) fistula. In dialysis, a surgical connection between an artery and a vein to allow for repeated needle punctures.
aspiration. Inhalation of abnormal contents, usually one’s own oral secretions or vomit, into the lungs.
asystole. Complete cessation of electrical activity of the heart.
autonomy. Self-determination; freedom from external control.
bronchial tree. The passageways that transport air from the trachea to the lungs.
capillary. The smallest branch of a blood vessel, carrying blood to and from tissues.
cardiac arrest. When the heart fails to circulate blood flow effectively, due to either abnormal rhythm, inadequate blood volume, poor pump function of the heart, or obstruction to blood flow.
cardiopulmonary resuscitation (CPR). Emergency chest compressions and ventilation to maintain blood flow to the brain when cardiac arrest occurs.
comfort measures only (CMO). A transition in care from treatment aimed toward cure, to treatment that emphasizes palliation of symptoms.
comorbidities. Preexisting chronic diseases.
computed tomography (CT) scan. A diagnostic imaging test that creates detailed cross-sectional images of tissue and internal organs.
continuous venovenous hemofiltration (CVVH). Continuous dialysis, a temporary option for patients who cannot tolerate hemodialysis.
debridement. Removal of damaged or infected tissue from a wound, either with medications, gauze dressings, or surgically with a scalpel or cautery.
delirium. Acute confusion that waxes and wanes, often accompanied by delusions, paranoia, and hallucinations.
dementia. Progressive loss of memory and daily indepen
dent functioning, as with Alzheimer’s disease.
deoxygenated. Depletion of oxygen.
dialysis. Removal of waste products and excess water from the blood stream as substitute for normal kidney function.
diuretic. Medication that promotes removal of excess water and salt from the body through increased urine production.
electrical cardioversion. An electrical shock administered to the chest to convert an abnormal rhythm back to a regular heartbeat.
electrical defibrillation. An electrical shock administered to the chest to treat cardiac arrest from an abnormal ventricular rhythm; higher voltage than cardioversion.
electrolytes. Minerals with an electric charge (e.g., calcium, magnesium, potassium, sodium) that play a vital role in functions throughout the body.
encephalopathy. A disorder in which a disease or a toxin impairs brain function.
endotracheal tube. A silicone tube placed into the windpipe for mechanical ventilation.
