Hard Choices for Loving People : CPR, Artificial Feeding, Comfort Care and the Patient with a Life-Threatening Illness

by Hank Dunn

Book by Dunn, Hank

Genres: Nonfiction, Health, Grief

76 pages, Paperback

First published July 1, 1999

Reviews

[Kim · Rating 2 out of 5]

Treatments have become more successful than this booklet says, so patients may want to look carefully at their choices. This is a review of the 2016 edition's section on CPR, since I do research on CPR at Globe1234. I expect other sections of the booklet may be out of date too.

I encourage people to hear directly from people who get life-saving treatments, by watching online videos made by people on: dialysis, feeding tubes, breathing tubes, with paralysis; survivors of CPR and comas. The comments below are based on published studies. You can find titles and copies by putting any citation in PubMed, like PMID:00.

The large majority of CPR survivors have no mental or physical injury. Of course some patients were dependent on other people before CPR, and some were even in comas. However the number dependent on others only grew 5% after CPR, and the number in comas grew 1% (supplement eTable 2 in PMID:22641228; most comas are temporary PMID:31308171 and PMID:19818896). This study and smaller US and Copenhagen studies with similar findings (PMID:23311551 and PMID:24269866) are the only studies I've found which compare mental ability before and after CPR, to show how few declined. 13% of patients had physical injuries from CPR, mostly broken bones and lung injuries which healed (PMID:25076024). Booklet page 10 wrongly says, "The individual's condition will most likely be much worse than before," and the booklet does not give any source.

The booklet's CPR pages discuss how often CPR used to fail. It now works better than most heart medicines. CPR always revives more people than DNR, and injures very few. That leaves a gap in the booklet: it does not discuss why some people still prefer DNR over successful CPR. Some are ready for the next life. Some want to avoid even a small 1% chance of a temporary coma, or 5% chance of losing independence.

DNR has another major effect, which the booklet omits: Even though DNR is only supposed to limit CPR, many doctors cut back on other types of care when they see a DNR order (PMID:21286839 and PMID:26662729). Some people appreciate having less curative treatment; others are missing out on care they want, so this side-effect of DNR needs consideration.

In 2014 and later, 25% of hospital patients who get CPR live to leave the hospital (page e270 in PMID:26673558). In Wyoming 40% live to leave the hospital, in Washington State 35% (supplement table 3 of PMID:25792560). Another third of patients revive initially, but do not survive their hospital stay, so CPR gave them a chance to say goodbye and donate organs (e270). Each person can decide if the current level of success is worth a try. Pages 8 and 12 of the booklet say 17% survive, which was an older average of 2000-2009.

After CPR, 59% live over a year, and 44% live over 3 years (PMID:23484828). Booklet page 10 erroneously says "the chances of long-term survival are slim." It does not give a source.

Booklet page 7 still refers to "early guidelines" which restricted CPR. It ignores the new guidelines adopted in 2010. Now guidelines say that CPR with success above 1% is not futile (part 3, sec.3.2 PMID:26472991). All types of patients now have success rates above 1%.

The booklet lists three groups as having survival under 2%. All three actually now have better survival, up to 24%. The three groups mentioned in the booklet are: patients (A) with 3 or more health problems, (B) with terminal disease, or (C) in long term care.

(A) MULTIPLE DISEASES: Pages 2, 8 and 12 claim survival is under 2% for "Those who have more than one or two serious medical conditions." The booklet's source says the opposite: 24% survival to hospital discharge among patients with three "chronic health conditions" and 18% survival among patients with 4-8 conditions (p.25 PMID:26339301).

(B) TERMINAL DISEASE: Pages 2, 8 and 12 claim survival is under 2% for "Those who have a terminal disease." However the booklet's source shows survival rates up to 17% (PMID:26339301):
_ 17% 2000-2002, cancer, CPR outside hospitals, p.21
_ 16.2% 1985-2000, metastatic cancer in general ward, p.21
_ 16% 1999-2011, hematologic tumors, pp.18-19
_ 15% 1999-2011, metastatic cancer, pp.19-20
_ 11.6% 1997-2004, cancer, p.17
_ 7.8% 2000-2004, metastatic cancer or hematologic malignancy, p.19
_ 7.8% 1990-2001, metastatic cancer, pp.19-20
_ 5.3% 1985-2000, metastatic cancer in ICU, p.21
_ 2% 1990-2001, hematologic cancers, pp.19-20

(C) LONG TERM CARE: Pages 8, 9, 10 and 12 of the booklet say survival is under 2% for "Those who are dependent on others for their care, or who live in a long term care facility like a nursing home" Page 10 adds "memory care" to the list. This has several flaws: When nursing home residents are in hospitals (a common place to discuss CPR/DNR status), they have about the same CPR survival as everyone else (supplement table 1 of PMID:24487717). When CPR happens in the nursing home itself, success is 4% (MyCares/Data/National Reports/Survival Report), and most nursing homes lack AEDs, which would give people better chances. Only one study included assisted living, with a sample too small to report (PMID:12879377), and no study covered memory care, or the many people dependent on family for their care, so there is no basis to say 2%.

Aside from factual issues, the booklet's tone is puzzling. Page 3 gives a false stereotype: "Almost all healthcare today is focused on preventing and curing disease." The author must know better: Large amounts of healthcare focus on managing chronic illness: nursing homes, dialysis, diabetes, heart disease, arthritis, asthma, lung and liver disorders.

Page 5 describes a mother who "did listen and seemed to understand what was going on. At the end of my visit I asked the daughter to follow me out to the car... I took the opportunity to try to convince her not to attempt heroic measures on her frail mother." The booklet does not discuss the ethics of asking the daughter to decide for her mother, when the mother was able to understand and decide for herself.

The booklet often says pain can be controlled, though the booklet does not discuss the mental fog which pain medicines can create. Page 46 just says, "Drowsiness associated with some pain medications usually decreases after several days of taking the medicine." There are non-drug ways to control pain, which Pain doctors have more training in than Palliative Care doctors (exam outlines for Board of Pain Management and Palliative Care certification), and the booklet does not discuss Pain doctors. A survey found most patients rank mental awareness almost as important as pain control (PMID:11074777). The same survey illuminates what patients do want near the end. 97% want a nurse they feel comfortable with. 95% want someone who will listen. 90% want a doctor they can discuss their worries with.

Patients and families need careful thought when they get medical advice. Doctors and hospitals are publicly ranked on the fraction of patients who live, and are fined for patients who get another hospitalization (readmission). So they're under pressure to focus on patients who will stabilize and survive. Published rankings don't count patients on hospice (PMID:22213491), creating an incentive to steer sicker people to hospice, even if modest efforts could control their diseases for more good months or years of life. These incentives conflict with the trust and unbiased judgment we want to have.

[Sophie Green · Rating 4 out of 5]

read this book for my class Grief, Loss, & Bereavement, this is a really valuable resource not only for clinicians but for people supporting someone at the end of life. very accessibly written with a balance of facts about end of life care and compassionate guidance

[Forrest Callicutt · Rating 5 out of 5]

Excellent advice for those facing decisions about care of loved ones who are at the end-of-life process. Very frank discussions about benefits and detriments of artificial means to keep people alive that are enduring terminal illnesses and diseases. Reminds us that we should be free of guilt about not using artificial means when it is the disease that is killing a person during this time. Concludes with a discussion about facing life in general with hope, rather than fear, and how that prepares you for letting a loved one go at the right time.

[Alex · Rating 4 out of 5]

Easy to read, informative booklet.

[Sara Bertuccio · Rating 5 out of 5]

Given to me by my palliative care rotation preceptor. Presents information about complex medical decisions in a digestible, person-centered manner!

[Josephine Briggs · Rating 5 out of 5]

This is a short, well told book, only 76 pages also containing endnotes. A book that everyone needs to read about the end of life. The book is written by Hank Dunn who has written "this booklet to help explain end-of-life decisions to patients and families and encouraging reflection on the issues discussed." The booklet was written in 1990.

"Since 1983 Hank Dunn has been ministering to patients at the end of their lives and their families. He served as a nursing home chaplain at Fairfax Nursing Center and as a staff chaplain for the Hospice Northern Virginia how Capital caring."

This booklet was given to me by a member of Palliative Care at the hospital where my husband was being treated.

The book contain four chapters, well documented, on CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness. The booklet goes into deep detail pro and against what is good, some others will not like, it all depends on circumstances and desires. This should depend on the patient's wishes. Whether to be in a hospital or to stay at home. The attempt of rescuitation. Use of artificial nutrition, plus more.

This is a serious, painful read, but good an encouraging to patients and families who are going through this. Should families feel they have not done right by loved ones? This is a hard read, but so needed. To do or not to do." This gives families encouragement and not blame for what is going on with loved ones. Some personal opinions about treatment opinions. "To let go and let be."

A sad little booklet, but with so much information.

[Luke Hillier · Rating 3 out of 5]

I'm doing an adult hospital chaplaincy field ed internship and my supervisor gave me this book as a helpful resource in that work. It's a short and simply written booklet by a healthcare chaplain that's essentially encouraging an embrace of palliative and (when appropriate) hospice healthcare. I found it particularly helpful as a means of dispelling some of the ways we've been enculturated to think about healthcare, with TV shows almost always showing successful CPR with no longterm aftermath and inevitable miracle cures that lead us to see everything as curable if we hold on long enough. Having had some heartbreaking visits with families who were gripped by their own guilt and fear around "letting go," I resonate deeply with Dunn's goal of educating families around the more ordinary realities of these circumstances. It's a helpful tool, and intentionally straightforward, but not the most engaging or thoughtful read so three stars feels right.

[Kathy Sebesta · Rating 4 out of 5]

One of the booklets we give out at hospice, to help people think about, then decide about, what they might want to do or not do when their time is coming. It's not just do you want CPR or not, it's also do you want a feeding tube if you can't eat? Do you want to be put on a ventilator if you're having trouble breathing? How far might you want to go if you or your loved one has dementia and can no longer function or fight off infection? It's simply written for the layperson and provides good food for thought.

[Veronica Knudson · Rating 4 out of 5]

A very good quick read that talks about end of life decisions. Discusses the use of artificial feeding (tube feeding) for comfort versus life sustaining, comfort care, etc. I would recommend this as a thought provoking book and a good discussion starter with whomever will have your medical power of attorney.

[Debbie Rhines · Rating 5 out of 5]

A quick/informative easy to read book about advanced directive and palliative/hospice care. Understanding end of life decisions are something not many people know about until they are in crisis. Thankful that I am becoming more knowledgeable about these important issues/decision for my personal and professional life.

[Mollee Ruth · Rating 3 out of 5]

I think this is a good book for people who may be dealing with finding themselves in a potential situation where these decisions need to be made. As a medical professional though I knew a lot of what was already in this book so I didn’t feel like it was helpful for me. However I will be passing. It a long to my mother to read for my grandma.

[Bryn Walker · Rating 5 out of 5]

Very easy read. I am a hospice nurse and purchased the book for our chaplain after a patient had a serious misunderstanding about the role of hospice. Ended up reading the book myself and heartily agree with what was said. Some of it was inaccurate to my particular location and state regulations, but that’s a high bar to expect each term to be specific to each location in the world.

[Jacie Coultas · Rating 5 out of 5]

“I hope my faith is a faith for loving fully each day with a sense of grace and gift. Then when I can no longer have this gift of life, I do not have to grasp it either for myself or for those I love.”

[Jessica · Rating 4 out of 5]

Helpful in relation to my work jam.

[Kyla Daniels · Rating 4 out of 5]

Could be so helpful for people preparing to lose a lived one.

[Marcia Roberts · Rating 5 out of 5]

This book provides good information for patients and caregivers making end of life choices.

[Ronayne Herbert · Rating 5 out of 5]

Excellent review of the choices we all may have to make when faced with a terminal or life threatening disease. Should be mandatory reading for all of us who think we will live forever.

[Meghan West · Rating 5 out of 5]

100% of us are going to die

[Char · Rating 5 out of 5]

The last chapter on letting go was the best part of the book, but the whole book had good info for making the hard decisions at the end of life stages.

[Colleen · Rating 4 out of 5]

I don't want to say "I Loved It" because that's not the kind of book this is.

That said, it was good. It said important things, and not too slowly or preaching-ly.

[Theresa · Rating 4 out of 5]

Good overview of end of life medical issues covered with pros and cons. Basic level so easy to understand but with enough explanation and facts to aid one considering such issues.

[butterbook · Rating 4 out of 5]

Great little primer on common end-of-life treatments and interventions. Recommended.

[Kate · Rating 4 out of 5]

Read it as part of a refresher course in palliative care.

[B Shelton · Rating 2 out of 5]

Very clinical book about the questions you should ask about sustaining life.

[Darcy S DeMaagd]

Not fun/light reading by any means. I enjoyed the insight this gave me to better serve patients.

[Sarah Sliva · Rating 3 out of 5]

Didn’t read for pleasure, but for work. Will be helpful in finding words for difficult conversations with patients.

[Kasson Massimino · Rating 5 out of 5]

This book helped me understand and appreciate death while working in the ICU. It helped me to find beauty in end of life rather than hiding from it and crying.

[Alli · Rating 4 out of 5]

I believe it’s important to plan for and make informed choices regarding life support at regular intervals along our life’s journey (and document them in a living will!). Age, overall health, and goals of care can all impact this decision-making process. It’s one of those things that we need to consider and make decisions about *before* we find ourselves in crisis.

This book is an invaluable primer for learning about, for example: when and why CPR could be more harmful than helpful, the impacts of artificial nutrition, why pulling back on life support is *not* doing harm, and many other things that don’t tend to come up in polite dinner conversation.

Hard recommend.

We focus a lot on how to live in a way that aligns with our values. Why don’t we think about planning ahead for death in a way that aligns with our values as well?

[Dottie Parish · Rating 5 out of 5]

This short (75 pages), informative book by Hank Dunn, a healthcare chaplain, presents clear and concise answers to the families of those nearing death. He notes that prior generations did not have feeding tubes, ventilators or CPR – so they were not faced with the choices facing many today as they age. He describes the issues in using these, pro and con, and offers clear steps to choosing the best route in a particular situation. The final chapter The Journey to Letting Be (23 pages) is the most valuable. This can be helpful to families as well as the person who is dying. He notes, “We will die whether we give up, let go or let be.” He hopes dying patients will have “a sense of being upheld by a loving God.”

[Kimberly · Rating 5 out of 5]

I was discussing a thought-provoking book called Knocking on Heaven's Door: The Path to a Better Way of Death with a friend recently. This friend, who used to work in a nursing home, recommended this short book by Hank Dunn, which provided helpful information for families with a loved one in the nursing home. This is a straight-forward explanation of the pros and cons of various medical interventions for critically ill patients--a valuable resource for those with the burden of making decisions about end-of-life care.