Preparing for Death: for yourself or others

Annotated Action Steps

Below will be a list of additional thoughts, links to websites, or links to additional resources relevant to a specific Action Step from the handouts given in the class. If there is a number preceding an item, it corresponds to an action step in the handout for that week.

Week 2  Week 3  Week 4  Week 5  Week 6  Week 7  Week 8

Week 1. -- Confronting Death - let's talk

3. Jimmy Carter's interview with CNN on 2019-11-03
Read about how he said he "was absolutely and completely at ease with death". The link above has the full text (and links to follow some rabbit holes) but what follows are some of the key parts (for our purpose):

Former President Jimmy Carter said Sunday that he found he "was absolutely and completely at ease with death" after doctors told him in 2015 that his cancer had spread to his brain.

"I assumed, naturally, that I was going to die very quickly," Carter said while delivering a church sermon in Plains, Georgia. "I obviously prayed about it. I didn't ask God to let me live, but I asked God to give me a proper attitude toward death. And I found that I was absolutely and completely at ease with death."

"It didn't really matter to me whether I died or lived. Except I was going to miss my family, and miss the work at the Carter Center and miss teaching your Sunday school service sometimes and so forth. All those delightful things," the 39th president added, smiling.

The son of a peanut farmer who served the United States in World War II, Carter announced he beat cancer in December 2015 after he received experimental treatment for liver cancer that metastasized to his brain. During a news conference at the time, Carter said his fate was "in the hands of God" and vowed to continue teaching Sunday school at his church "as long as I'm physically able."
4. For each person, there are only two days with fewer than 24 hours.
Kathryn Mannix wrote in her book With the End in Mind: Dying, Death, and Wisdom in an Age of Denial something like: There are only two days with fewer than 24 hours in each lifetime (ignoring daylight savings, traveling across time zones and technical issues): birth and death.
6. Why Legislators and Doctors Don't Always Agree on the Definition of Death
What is the past and present definitions of death? Does it depend on where you live? What is the right approach? Below is an expansion of what is given in the handout (and the first part of what is in the link above):

How can you truly know when someone is dead? Historically, death was determined by holding a mirror up to a person's mouth to see if they were breathing. But this method was not foolproof, so safety coffins outfitted with a string attached to a bell were used to allow someone who woke up after burial to easily send out a distress signal.

Today, the most commonly accepted definition of death is irreversible cardiopulmonary arrest--when a person no longer has a palpable pulse, an audible heartbeat, or sounds of breathing. The lesser-known definition is the time when a person's entire brain irreversibly stops functioning. While these conditions can be clearly and conclusively determined, an inconsistent patchwork of laws about death has made it possible to be dead in one state and not in another.

Death by neurologic criteria, or brain death, was originally described in the United States at Harvard in 1968, in response to advances in cardiopulmonary resuscitation (CPR) and ventilators that allowed a patient's heart and lungs to continue working independent of brain function. The Harvard criteria served as the foundation for the currently accepted medical guidelines for determining brain death in the United States.
8. From what does the world die?
This site shows the relative frequencies of the various causes of death for the whole world as well as individual places within the world. You can also move a slider to view changes over the years.
9. Is Death a Taboo Subject for You, Or Are You Preparing for Life's Greatest Certainty?
Randy Alcorn (Christian author on a variety of topics) addresses the issue of talking about death.
9. Help us break the taboo around death
From the Marie Curie website whose focus is care and support through terminal illness, the title of the page says it all.
10. More Bible verses that deal with fear of death
31 What, then, shall we say in response to these things? If God is for us, who can be against us? 32 He who did not spare his own Son, but gave him up for us all--how will he not also, along with him, graciously give us all things? 33 Who will bring any charge against those whom God has chosen? It is God who justifies. 34 Who then is the one who condemns? No one. Christ Jesus who died--more than that, who was raised to life--is at the right hand of God and is also interceding for us. 35 Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? 36 As it is written: "For your sake we face death all day long; we are considered as sheep to be slaughtered." 37 No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. Romans 8:31-39
9. A Christian Perspective on Death
From a Grace Church of Orange, CA, this page talks about how a Christian should think about death, with plenty of scripture to support the arguments.

Week 2. -- What to do BEFORE a sudden death or onset of a serious illness

1. Ensure to establish and maintain a good relationship with God.
This is a good idea to do on a daily basis. Luke 9:23 Then he said to them all: "Whoever wants to be my disciple must deny themselves and take up their cross daily and follow me."
2. Ensure to establish and maintain good relationships with your family members and friends.
Some guiding verses:

Matthew 22:37-40 - learn to love: "'Love the Lord your God with all your heart and with all your soul and with all your mind.' 38 This is the first and greatest commandment. 39 And the second is like it: 'Love your neighbor as yourself.' 40 All the Law and the Prophets hang on these two commandments."

Matthew 7:12 - how do we love?: "So in everything, do to others what you would have them do to you, for this sums up the Law and the Prophets"

Galatians 5:22,23 - develop fruit: "But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control; against such things there is no law."

Ephesians 4:26 - avoid anger: BE ANGRY, AND yet DO NOT SIN; do not let the sun go down on your anger
3. Family medical history
There is value is knowing your families medical history. Here are two links to review: National Institute for Health (.gov) and Mayo Clinic
4. 25 Reasons to Learn About Your Family History
Beyond just the medical knowledge, there are other reasons to learn about your family.
6. organdonor.gov, part of Health Resources & Services Administration
Learn more about organ donations from the federal govt. perspective. Link to sign up at any state. Consider also: Organ donation: Don't let these myths confuse you brought to you from Mayo Clinic
6. The University of Iowa Deeded Body Program
This talks about giving your whole body to the University of Iowa. Equivalent at Univ. of MN, where Marcia donated hers. What Happens to Your Body When It's Donated to Science?
8. Do I Need A Will? Who Needs A Will (And When) (and similar page, but expanded)
These two pages talk about who needs a will and why as well as discussing related topics
8, 9. Planning Your Legacy: A Guide to Planning your Will & Trust
This is a 48 page pdf prepared for Friends of Iowa Public Television Foundation to encourage donations to their foundation. However, it has a lot of good general information.
9. What Is a Living Trust? Do You Need One?
This page discusses what a trust is and how it can be beneficial for some. You may also wish to read a Kiplinger article that discusses whether trusts are over-hyped.
10. The Durable Power of Attorney: Health Care and Finances
A power of attorney for financial and medical issues can be important for those who wish to appoint someone to help in case of mental or physical impairments.
11. Advance Directive - similar to Living Will and Healthcare Power of Attorney
If a person has a living will and medical power of attorney, when an accident occurs or some type of mental or physical incapacity occurs, these documents allow a person to appoint someone else to make medical decisions. Also, check out 6 Characteristics to Look for When Choosing a [healthcare] Power of Attorney
11. Extensive information about Advanced Directives can be found in the Staying in Charge book.
There are three chapters in this book that are worth reading that cover this topic: (6) The ABCs of Advance Directives; (7) Choosing an agent; (8) Being an agent. This book is available at the Pella public library and is well-written.
11. Being Mortal: Medicine and What Matters in the End book, 178-180, talking about the value of an advanced directive (health care power of attorney) benefits:
Can mere discussions achieve such effects? Consider the case of La Crosse, Wisconsin. Its elderly residents have unusually low end-of-life hospital costs. During their last six months, according to Medicare data, they spend half as many days in the hospital as the national average, and there's no sign that doctors or patients are halting care prematurely. Despite average rates of obesity and smoking, their life expectancy outpaces the national mean by a year.

I spoke to Gregory Thompson, a critical care specialist at Gundersen Lutheran Hospital, while he was on ICU duty one evening, and he ran through his list of patients with me. In most respects, the patients were like those found in any ICU -- terribly sick and living through the most perilous days of their lives. There was a young woman with multiple organ failure from a devastating case of pneumonia, a man in his midsixties with a ruptured colon that had caused a rampaging infection and a heart attack. Yet these patients were completely different from those in the ICUs I'd worked in: none had a terminal disease; none battled the final stages of metastatic cancer or untreatable heart failure or dementia.

To understand La Crosse, Thompson said, you had to go back to 1991, when local medical leaders headed a systematic campaign to get medical people and patients to discuss end-of-life wishes. Within a few years, it became routine for all patients admitted to a hospital, nursing home, or assisted living facility to sit down with someone experienced in these conversations and complete a multiple-choice form that boiled down to four crucial questions. At this moment in your life, the form asked:

1. Do you want to be resuscitated if your heart stops?
2. Do you want aggressive treatments such as intubation and mechanical ventilation?
3. Do you want antibiotics?
4. Do you want tube or intravenous feeding if you can't eat on your own?

By 1996, 85 percent of La Crosse residents who died had a written advanced directive like this, up from 15 percent, and doctors virtually always knew of the instructions and followed them. Having this system in place, Thompson said, has made his job vastly easier. But it's not because the specifics are spelled out for him every time a sick patient arrives in his unit.

"These things are not laid out in stone," he told me. Whatever the yes/no answers people may put on a piece of paper, one will find nuances and complexities in what they mean. "But instead of having the discussion when they get to the ICU, we find many times it has already taken place."

Answers to the list of questions change as patients go from entering the hospital for the delivery of a child to entering for complications of Alzheimer's disease. But in La Crosse, the system means that people are far more likely to have talked about what they want and what they don't want before they and their relatives find themselves in the throes of crisis and fear wishes aren't clear, Thompson said, "families have also become much more receptive to having the discussion." The discussion, not the list, was what mattered most. Discussion had brought La Crosse's end-of-life costs down to half the national average. It was that simple -- and that complicated.
12. Should you add beneficiaries to your accounts?
This page discusses how and why to beneficiaries to IRAs and other retirement accounts, but can also be added to individual non-retirement accounts.
13. Passing on Assets Outside of Probate: PODs and TODs
There are important potential advantages and disadvantages of using PODs and TODs so be intentional and consult with a person with estate planning experience (e.g., a lawyer). While it can bypass probate, there are some important issues to consider if a person is single (such as paying last taxes, debts, funeral expenses and so on). (Perhaps also read this.)
15. 14 Steps to Manage Your Debt - first is to list them
The first step to understand your debt is to list your debts. Any executor is going to need to know the list of your ongoing debts (mortgage, car loan, business loan and so on) as well as the list of credit cards that you use. This page is specifically focused on helping you to get out of debt, but it is still applicable here since it is best to try to not leave debt to those who will take care of your estate.
16. Make a list of all those to whom you have loaned money and the associated paperwork for the accounts, including amount and contact information.
For the same reason as the last item, your executor also needs to know who will be owing the estate, so make a list.
17. 10 Best Password Manager of 2020
This page lists a number of password managers. Be sure to leave the "key" (main password to get into the manager) to your executor or someone that you trust.
18. How to Write a Meaningful Obituary
This page will give you ideas about how to write a meaningful obituary. Another idea is to peruse a newspaper to read others.
20. Term Life vs. Whole Life Insurance
This page at the Dave Ramsey site explains the the main types of life insurance and explains why generally term is the best for most and how should eventually try to "wean" yourself from even that. (Another site focusing on term life.)
22. Establish one location where you keep your "important papers" from the list that you should have generated here and gather them all together.
This location should not be in bank's safety deposit box if you have the only key but rather a place like a briefcase or file drawer or three-ring binder. This is a good place for past year taxes and other ownership papers. A fireproof box for home is not a bad idea. Update information on an annual basis or as needed. Also include: Children's names, date of birth, social security, contact information; lifetime gifts that have been given thus far (subject to $15000 limit per person per year without consequences); information about key and location of bank safety deposit box or equivalent at home; list of real estate assets; checking account number(s) and location(s); saving account number(s) and location(s); CDs; money market funds; tax-sheltered annuity not in retirement plan; paper bonds and stock certificates; saving bonds; brokerage account(s); mutual fund(s); automobile(s); life insurance policies; retirement accounts; pensions; mortgages; credit cards; other loans/debts; and more. Here are some links to address this topic: How to Keep Important Documents Safe in Your Home and Disaster-Proofing Your Documents
checklist of items from Dying Matters website
A good and comprehensive list of things to be done at the end of life. There is also a good discussion comparing birth vs death.

Week 3. -- Issues to consider at onset of a serious illness

1. Symptoms of 12 Serious Diseases and Health Problems
Recall the baseline of information from the previous week. This is helpful for when you see changes. Here are some specific changes to look for in a number of specific problems
2. Conversation Starter Kit
This can be helpful to assess your perspective on medical issues, wishes for amount and location of care as well as other related aspects.
3. Do Patients Have the Right to Refuse Medical Treatment?
This page discusses your rights to refuse medical treatment in various contexts
4. There are a variety of emotions that arise when a serious diagnosis is heard.
Start, by remembering the words of our King. We know that we all will die at some point, but until that time Jesus is the author of life. Read John 10:1-18, and verse 10 in particular. As we wrestle with the news, remember that Jesus is the author of peace. In the days before his death, he spoke words of peace to his disciples in John 14:27; receive His peace.
4. Terminal illness: Supporting a terminally ill loved one - Mayo Clinic
This page from the Mayo Clinic has advice for both the one who is terminally ill and the caregiver. This page has advice for both onset and the final days, so keep that in mind.
4. Denial is one response to a serious diagnosis. This quote is from p.17 of the Staying in Charge book.
When you are struck by a serious illness or accident that could lead to your death, denial is often an enemy of getting the kind of care you deserve. This is the almost automatic thinking your brain goes through when you are threatened with illness: "Its nothing. It'll go away." This kind of thinking isn't unique to any particular age group. It could happen when you're older, or younger. It could be a cancer, it could be Lou Gehrig's disease, it could be an ailment of the heart or lungs or intestinal system, or simply a bad accident. One day you believe you're healthy, the next day you find out that you're not.

The unwillingness to accept that you've got a medical problem is common. Its an understandable emotion, and comes from the terrible thought that lurks beneath--that we are mortal and will die sooner than we want to.

The Result: Denial is definitely a two-edged sword. A certain amount can be helpful. It can give you some protection against panic. It can allow you to figure out what to do and how to do it, and how much time you have to do it. The "I'm not dying" feeling may allow you to enter a state of mind that permits you to keep your cool and go about the business of planning what you would do if you were seriously ill.

On the other hand, wishing it weren't so keeps you and your family from Believing that a serious physical illness has befallen you. This may prevent you from getting the help you need, or even from going to get a checkup at all. If you are clearheaded about this but your family isn't, your comfort level isn't helped by loved ones who deny that you're seriously ill or in pain, or insist that your physician has the wrong diagnosis. (Getting a second opinion is always a good idea, but running around looking for someone to give you good news may just be postponing the day you need to take stock of where you actually are.)
4. I Just Learned that I Have a Terminal Illness: Now What?
An interesting article from Psychology Today written by one in a terminal situation and the issues that she confronts and how she meets them.
4. Finding out you are dying
Upsetting news can affect you and the people close to you in different ways. (While this page specifically focuses on cancer, it generalizes well.)
4. What do you say when someone tells you they're going to die?
From the Marie Curie web site, this page discusses how to have conversations with someone who is ill and how to respond to differen circumstances.
4. What to Say to Someone Who's Very Sick
An AARP page addressing issues similar to the link above but with additional points.
5. Finding out you are dying
Discusses some emotions and responses to learning about a terminal situation.
6. Scriptures to implement as onset occurs.
But seek first His kingdom and His righteousness, and all these things will be added to you. Matthew 6:33

13 Is anyone among you suffering? Then he must pray. Is anyone cheerful? He is to sing praises. 14 Is anyone among you sick? Then he must call for the elders of the church and they are to pray over him, anointing him with oil in the name of the Lord; 15 and the prayer offered in faith will restore the one who is sick, and the Lord will raise him up, and if he has committed sins, they will be forgiven him. 16 Therefore, confess your sins to one another, and pray for one another so that you may be healed. The effective prayer of a righteous man can accomplish much. James 5:13-16

Come near to God and he will come near to you. Wash your hands, you sinners, and purify your hearts, you double-minded. James 4:8

You will seek me and find me when you seek me with all your heart. Jeremiah 29:13

You, God, are my God, earnestly I seek you; I thirst for you, my whole being longs for you, in a dry and parched land where there is no water. Psalm 63:1

Look to the LORD and his strength; seek his face always. Psalm 105:4

So I say to you: Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. 10 For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened. Luke 11:9-10
7. Regardless of any predicted length of time before death, intentionally choose to live each day to its fullest and maximize the quality of your time.
In the book May I Walk You Home, author Joyce talks about how her husband Gary was initially told that he had about 6 months to live (as a 34-year old). Having confidence in that time table, they made many changes and this led to some upheaval. Five years later he went back to where he was diagnosed and was told that he was cured. But he ended up with a return of the cancer though he lived about 20 years more. See pages 25-28.

On page 29 of the Staying in Charge book in a section focusing on Quality of Life, the authors say: "In short, while delaying death may not be the same as prolonging life, each of us needs to decide which is which for ourselves."
7. You Can Enjoy Your Life - Every Day!
Joyce Meyer talks about learning to life NOW. Some good word to read.
9. How Medically Accurate is Your Favorite Hospital Show?
Some are "better" than others.
10. After the dust has settled, this is a good time to review items in step 2 and address the items not yet done. Do not procrastinate now.
Sometimes things move fast so don't think you have plenty of time. Keep in mind what God said to Hezekiah via Isaiah in II Kings 20:1: In those days Hezekiah became ill and was at the point of death. The prophet Isaiah son of Amoz went to him and said, 'This is what the Lord says: "Put your house in order, because you are going to die; you will not recover."'

Quote from Staying in Charge book (p.22): But thinking about death is not the same as death itself. And while you may be afraid of dying, you should not be afraid of preparing for dying. Despite superstitions to the contrary, you won't die simply because you want to prepare for bad times, any more than you'll die if you take out life insurance. In other words, silence is not golden, ignorance is not bliss.

(More, on p.23): And, there are benefits of thinking ahead. Again, the HHS studies showed that discussing wishes ahead of time with doctors increased patient satisfaction among patients age 65 years and over. Patients who talked with their families or physicians about their preferences for end-of-life care and put those thoughts on paper:

• Had less fear and anxiety
• Felt they had more ability to influence and direct their medical care
• Believed that their physicians had a better understanding of their wishes
• Indicated a greater understanding and comfort level than they had before the discussion
• Conveyed to their loved ones a greater confidence to predict preferences and a stronger belief in the importance of having discussed wishes in advance
• Continued to discuss and talk about these concerns with their families.

"Such discussions enabled patients and families to reconcile their differences about end-of-life care and helped the family and physician come to agreement about what to do if they should need to make decisions for the patient", says the Department of Health and Human Services.

(Finally, p.26 has): Regarding death, Shakespeare has Hamlet say that "the readiness is all." He is talking about the preparedness of the spirit and the mind as well as of the body. That kind of preparedness takes work. But its well worth it.
11. Having an advanced directive (health care power of attorney and living will) is critical.
This was discussed in week 2, step 11. There are links on this page there. The resources page also has links to information and forms at Pella Regional Health Center, the Five Wishes form, and the Conversation Starter Kit to begin thinking about such issues
12. For each decision that needs to be made, weigh very carefully on a balance the pain versus the gain.
Do not make these decisions in a vacuum. Pray for wisdom and read the book of Wisdom: Proverbs. In particular, read Prov. 3:5,6, 16:3.
13. Regarding asking questions about treatment including pros and cons:
Keep in mind that sometimes, some doctors equate death with failure on their part and so they push harder for a treatment to postpone death. Of course, it is also in their mindset, thankfully, to try to help you live, which does not always mean avoiding death. It is almost always OK to not respond immediately even when a doctor wants you to start a treatment immediately.

Quote from Living Thoughtfully, Dying Well (p.94): Repeatedly, patients describe their encounter with the healthcare system as "being on a conyeyor belt." Implicit in that description is the feeling that things are rushing by too fast without time for adequate discussion and asking what it means. This is when you call time-out, take a deep breath, and give yourself the space to more fully understand the next steps.
15. Caring Bridge
This is a web site where people can communicate by posting to a group of interested parties the status of someone's health. It can relieve one from doing many one-to-one updates. Since it can become exhausting to communicate with those who want to know the results of tests or how the loved one is doing, this is an alternative.
16. Decide to live for the now:
One thing Marcia and I intentionally decided was that we couldn't change the past nor could we specify the future, but we could try to make today the best possible so that we can to shape the future.
17. Medical research on the internet:
Marcia's oncology nurse told Marcia to quit reading the internet because she knew how bad it could be, but Marcia thought it was helpful. Here is one comment from a site Marcia asked me to review: "The FDA, government and the medical world make trillions of dollars per year on selling people medicine to cure illnesses......The FDA and packaged food industry make even more by selling 'high taste' foods which then leads people to illnesses. IT GOES ROUND AND ROUND AND ROUND!"
18. List of potential side effects of a recommended drug:
The list is partly long for legal reasons so that drug companies have ammunition against law suits. When Marcia was about to start taking the first chemo treatments (the "hard" type), she was overwhelmed and looked at me aghast. The choice, from our perspective, was that if she didn't take it, she will die from the cancer but if she does take she may also die from the side effects. Fortunately, things went relatively well with the chemo and it was very effective. But Marcia said, as she signed a consent form, "I just signed away my life."
Some definitions: (medical) diagnosis, Prognosis, Terminal illness, Chronic condition, Comprehensive medical dictionary, Ways to guess the meaning if you are an etymologist
It may be helpful to learn some of the vocabulary of the medical world
Types of scans and imaging: Overview at TheConversation.com, Overview at DignityHealth.org, X-ray, PET scan, CT (CAT) scan, MRI, Ultrasound
It may be helpful to become educated on procedures that you or someone else undergoes

Week 4. -- Issues as a a serious illness makes a bigger impact

1. Regarding funeral preparations:
It may be useful to talk with loved ones concerning your thoughts and plans, and then meet with a funeral director, if that would help. At least, write down your thoughts. Include, if you wish, guidance about cremation, embalming, open casket, a funeral or memorial service, any special speakers, musicians, music, scripture and more. More on this in week 6.
3. What do you say to a friend with terminal cancer?
Though the title has "cancer" in it, this is applicable any illness. This is a good article from someone who has been there and gives a list of things to do and not do to help your friend.
4. Deathbed Etiquette
This is a list of tips and things to consider in order to be a good visitor to a loved one. This page has a link in order to download a pdf version of the list.
5. Do you need to be convinced that pain control is valuable for a terminally ill person?
In the Staying in Charge book, we have the following quote on p.32 from Dr. Stephen Pantilat: People who are dying have lots things that they want to take care of. They want to say good-bye to their loved ones. They want to finish writing a book. They want to enjoy the time they have. And pain really grips the mind and doesn't let go, it doesn't allow you to focus on the things that are, frankly, much more important than thinking about how much pain you're in.

On p.31 of the same book (just before the quote above), it says: "And why is it so important to control pain? Not just because it's unpleasant, but because it gets in the way of all sorts of opportunities to make use of your final years, months, and days."
5. Concerned about being addicted to an opioide?
See page 79 of our text. Also, in the Staying in Charge book, we have the following quote on pp.32-33: It turns out that this fear [of becoming addicted] is totally without foundation. According to Dr. Leigh Fredholm, "Patients who take pain medication for pain become more functional--they go to work; they interact with their families; they get out of bed; and they become more like themselves. In contrast, patients who take pain medications to get high become less functional--they go to bed; they lie; they cheat; they steal and become less like themselves." In other words, addiction and pain control are worlds apart.
7. Value of taking a laxative or stool softener
Constipation has its own pain and complications and there is no reason to add more issues to the current ones. Even if you prefer to limit medicines, this is not a place to take this stand. Read more.
8. Ask these questions when you get a new prescription
A Harvard-affiliated pharmacist suggests some useful things to think about when you are given a prescription.
9. Feeling compelled to stay with the dying person
My dad asked my mom to go out and see if she could see the sandhill crane that he thought he heard flying over. He died while she was outside for a few moments. Similarly for her second husband. Marcia and I both agreed that it was important that I took a weekly trip to town (45 minutes away) to get groceries and play racquetball. This weekly trip helped me to have more strength to help her.
10. Value of touch
Marcia had metastatic bone cancer that effected her shoulders, spine, ribs and more. I tried to always watch when someone was greeting Marcia to try to intercept anyone wanting to give a typical shoulder squeeze. I missed it once and she was in pain. On p. 58 of May I Walk You Home it says, by a hospice patient to a nurse, "When you touch me, I feel like you commit yourself to listening to me in the moments ahead."
11. Letter template for the Four Things
If you would like some guidance how to write or phrase a letter to a loved one in response to the notions in the book The Four Things That Matter Most: A Book About Living, this is a good starting point.
12. Understanding Do Not Resuscitate (DNR) Orders
More details about when and when not to have a DNR order in place.
12. Un-extraordinary measures: Stats show CPR often falls flat
This 2013 CNN article discusses CPR and misperception of its value in saving lives. For those who are already at the end of life, it can be more damaging and painful and detract from one's quality of life. Also, you can read a related blog at the NY Times.
12. Doctors Really Do Die Differently: Research Says That More Physicians Plan Ahead, Reject CPR, and Die In Peace
A very intersting article about doctors' plans for their end-of-life. If you liked this article, here is a similar, related article. Additionally, here is a Washington Post response to the original article, which is interesting.
13. Palliative Care: Support at any time during a serious illness and When Is Palliative Care Appropriate?
The first article is from ChoosingWisely, an initiative of the ABIM Foundation copyright by Consumer Reports. The second article is from WebMD.
14. A quote from the Being Mortal: Medicine and What Matters in the End book, p.154, contrasting ICU patients versus hospice patients and more:
In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one's final days in an ICU because of terminal illness is for most people a kind of failure. You lie attached to a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said good-bye or "It's okay" or "I'm sorry" or "I love you."

People with serious illness have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others, and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The question therefore is not how we can afford this system's expense. It is how we can build a health care system that will actually help people achieve what's most important to them at the end of their lives.
14. Comment on the value of hospice from page 51 of Staying in Charge book:
Putting it another way, one hospice worker said, "Here's how I like to frame it for people. By adding support, by adding caregivers and expertise and more spiritual care, more physician care, nursing care, all of it, you become more able to do the things you want to do The goal is to make sure that youre as highly functioning as possible through the good control of your symptoms."

Actually, there is a whole chapter (5 - The Facts About Hospice) in this book that is worth reading.
14. When is it Time for Hospice? and How to Choose a Hospice - The RIGHT Questions to Ask and Choosing hospice
Here are several articles on when and how hospice should be chosen.
15. Life is for living
From the Dying Matters web site, this page is designed as a leaflet to hand out but has some good practical advice for how live at this stage. (Also available as a Text-only leaflet and there is an alternate version of the one above.)
16. Evolving concept of hope can be helpful:
May I Walk You Home? had the following to say: Hope changes from I hope I will be cured, to I hope I can keep working, to I hope I will be able to keep eating, to I hope I have a comfortable death free of pain. Sometimes hope becomes more beautiful than ever in our lives because it is about hope for the present moment and hope that is natural, such as, I hope the sunshine's today.
18. How to Get Help Paying Medical Bills
This is one of many articles that discusses how you can find help in dealing with medical bills, looking at a variety of angles.
22. https://www.caregiving.com
A general page with many subpages with useful information.
22. 25 Organizations that Take Care of Caregivers
A list of 25 organizations with a brief summary of each organization and then a link to it.
22. Caregiving 101: On Being a Caregiver
Some general, but useful, basic information on being a caregiver from the National Center on Caregiving (Family Caregiver Alliance)
22. Today's Caregiver
While promoting a magazine focusing on caregivers, there are still some useful pages to view.
22. Empowering Caregivers
This an older site and some parts have not been updated since 2003, but there still may be items of interest.
22. Caregiver Action Network
A collection of pages with concrete action steps for various types of caregivers and their needs.
22. Rosalynn Carter Institute for Caregiving
This is a place to obtain additional instruction and guidance to be a caregiver.

Week 5. -- The final days

1. Funeral plans, including service(s), burial location and related choices.
There are many choices to be considered here. If possible, determine from the dying person ahead of time of his/her desires or seek to find it recorded somewhere in the personal effects or will. In particular, it is very important to check to see if a prearranged cemetery plot and/or funeral service has been considered and possibly already purchased. Typically, the body will be (A) buried (in a cemetery); (B) cremated (ashes can be buried, retained, or scattered); (C) have some organs donated and then (A) or (B); (D) be donated whole to some organization such as a medical school. In the latter case, the policy there dictates what happens next. Since the last two choices have a set course of action, we focus on the first two choices. For a burial of the whole body, one typically contacts a funeral home to help make the arrangements. For a cremation, one can contact a funeral home or a crematorium, the latter sometimes charging less. Before a cremation, be sure to remove jewelry or keepsakes. After a cremation, the cremains are returned in some type of urn or box. For option (A), a burial location must also be chosen. In other words, a cemetery needs to be chosen and a gravesite chosen before a burial can proceed; this is best, if possible, prearranged since there are enough other issues to consider at the time of the death. The next choice is to decide about a service or not. The choices are: (1) no service at all; (2) a funeral with the body present in a casket; (3) a memorial service with the body not present (since already buried, cremated, or donated); (4) a graveside service at the cemetery. The latter can be done in conjunction with (2) if the family desires a more private setting. For options (2) and (3), one chooses whether to hold the service in a church or a funeral home. Additionally, with these two choices and possibly choice (4) as well, there are sometimes visitation gatherings before the service, often held at a funeral home, the person's home, or a church, with or without the casket (coffin) or urn, as a time for visiting the family of the deceased. This tends to be more informal and is sometimes called a wake, viewing, visitation, or other names. If option (2) is chosen, one needs to decide if the casket will be open or closed. If open, the body needs to undergo embalming, but may not embalming if it is closed and the funeral quickly follows the death. Of course, one also needs to decide on the type of casket, of which there are many choices and costs. Since the body will decompose regardless of the choice, you may wish to carefully reflect on what is most important when making this choice. While there are many other choices that a funeral home may offer, if choices (2), (3), or (4) are chosen, the last substantial choice is the content, order, music, and participants (officiant, speaker, eulogist) of the selected service. Note that if a memorial service is chosen and the body was cremated or donated, a funeral home need not be necessary, though one may be helpful. Additional items to consider: service program/brochure, pallbearers, guestbook, snack and drink for any services, considering to whom it may be appropriate for memorials to be directed.
3. Consider the spiritual component of the dying person.
Read the quoted portion of the intro to O Love That Will Not Let Me Go: Facing Death with Courageous Confidence in God, edited by Nancy Guthrie
5. The Top 5 Things to Do When a Loved One Is Dying
Needless to say, we are not taught how to face our own death or that of a loved one, and are likely to panic in death's presence. So start by recognizing this state of affairs, and don't pressure yourself to "do it right."
5. Caring for someone nearing the end of life
From Cancer Council Victoria (Australia), this site does an excellent job describing the things that a caregiver can do as the loved is in the active stage of dying. The page also describes the typical symptoms that may occur during this process for the dying person.
5. Providing Care and Comfort at the End of Life
From National Institute on Aging (NIA - part of NIH.gov), this gives some practical things a caregiver can initiate to help their loved one. Well done!
5. Dealing With Your Loved One's Imminent Death -- Preparations and Activities
One more page dealing with this topic but it has a lot of details and useful information.
5. Practicalities to think about when someone is dying
The suggestions on this page are aimed at relatives and caregivers of people who are dying in a hospice, nursing home or hospital.
6. Where should one die? Advantages at home, if this works -- from pp.95-96 of Living Thoughtfully, Dying Well book:
In addition to the mental health aspects, there are other clear advantages to dying at home in a familiar setting. Dying at home becomes a family affair with the ability to make decisions together in a familiar atmosphere, a sense of control over the proceedings, and sensitivity to the privacy needs of the patient With the patient s last days in the home, the family can create lasting and loving memories not possible in the hospital.

The advantages of dying at home also extend to the caregivers. Studies show that the incidence of prolonged grief and PTSD among caregivers is markedly less when the patient dies at home compared to death in the hospital. Not insignificantly, nor surprisingly, the cost is vastly reduced when death occurs at home.
8. The Last Tasks of Dying: Finding Closure and Peace at the End of Life
Walks through a summary of The Four Things That Matter Most: A Book About Living
9. Doctors Really Do Die Differently: Research Says That More Physicians Plan Ahead, Reject CPR, and Die In Peace
A very intersting article about doctors plan for their end-of-life. If you liked this article, here is a similar, related article. Additionally, here is a Washington Post response to the original article, which is interesting.
9. Being Mortal: Medicine and What Matters in the End book, 154, talking about ICU patients:
While seeing a patient in an intensive care unit at my hospital, I stopped to talk with the critical care physician on duty, someone I'd known since college. "I'm running a warehouse for the dying," she said bleakly. Of the ten patients in her unit, she said, only two were likely to leave the hospital for any length of time. More typical was an almost eighty-year-old woman at the end of her life, with irreversible congestive heart failure, who was in the ICU for the second time in three weeks, drugged to oblivion and tubed in most natural orifices as well as a few artificial ones. Or the seventy-year-old with a cancer that had metastasized to her lungs and bone and a fungal pneumonia that arise only in the final phase of the illness. She had chosen to forgo treatment, but her oncologist pushed her to change her mind and she was put on a ventilator and antibiotics. Another woman, in her eighties, with end-stage respiratory and kidney failure, had been in the unit for two weeks. Her husband had died after a long illness, with a feeding tube and a tracheostomy, and she had mentioned that she didn't want to die that way. But her children couldn't let her go and asked to proceed with the placement of various devices: a permanent tracheostomy, a feeding tube, and a dialysis catheter. So now she just lay there tethered to her pumps, drifting in and out of consciousness.

Almost all these patients had known, for some time, that they had a terminal condition. Yet they -- along with their families and doctors -- were unprepared for the final stage.

"We are having more conversation now about what patients want for the end of their life, by far, than they have had in all their lives to this point," my friend said. "The problem is that's way too late."
9. Quote from the Staying in Charge book on p.45 (and hopefully things have changed since the publication date of 2004):
Most patients still die in hospitals, many of them in intensive care units that control their breathing, their ingestion of nutrition, and everything else. Moretti puts it this way: "ICUs are set up so that you have 10 minutes to visit with your family member an hour. I recently visited a couple who had been married for over 45 years. The husband got 10 minutes an hour to spend with his wife. And she was dying. And the family knew that, the doctor knew that, the nurse knew that. Yet they were unwilling to change the rules for that visitation. In hospice, there's never a limit."
9. 'Warehouses for the dying': Are we prolonging life or prolonging death?
This is asking whether an ICU is prolonging death more than life and suggesting a rethinking of the ICU. Note that John Wyatt asks the same question in the book we are reading.
11. Speaking to your children about death
From the Art of Dying Well, this page has a summary of an excellent podcast that addresses talking about death with children. The strong Christian faith of the parents guided them how to talk to their children as the father was dying.
11. Concepts of Death by Age Group
This page gives some guidelines on how much to possibly expect in terms of understanding death for various age groups.
11. Death: how to talk about it with children
An Australian parenting site talks about talking to children about death.
11. When Do Kids Understand Death?
A National Geographic page also talks about children's ability to understand death.
14. How to successfully turn a patient in bed
This talks through the process of turning a patient. It may also be helpful to watch a video.
15. Discussion of end-of-life eating
The author of the May I Walk You Home book talks about how she had to convince a mother that her dying son was needing to eat at this point. Start in the middle of the page "I continued to monitor..."
22. Letting go narrative. (Start on last paragraph on the left.)
The author of the May I Walk You Home book talks about how she encourages her mother to let go.
24. Talking about death and dying
From Dying Matters, this talks about how a visitor can overcome fear of talking with the dying person and learning to say goodbye.
24. At the bedside
Things to consider for visitors of a dying person, particularly if at a hospital or hospice.
25. Five Emotional Signs that Death is Nearing
From Crossroads Hospice Charitable Foundation (Tulsa, OK). Describes five emotional symptoms and how to respond to each for the benefit of the dying person.
25. How to Recognize When Your Loved One Is Dying
This page walks through the dying process on a timeline: 1-3 months prior, 1-2 weeks prior, and last couple of days to hours prior death.
25. What are the signs that someone is close to death?
From Medical News Today, this article explores 11 signs that death is approaching. It goes on to look at the signs that indicate a person has died and discusses how to cope with the death of a loved one.
25. What to Expect When Your Loved One Is Dying
As given in the title, this page from WebMD talks through the symptoms that occur during different stages of death.
25. What to Expect When a Person With Cancer is Nearing Death
Though from the American Cancer Society, this is a great page for anyone's illness, listing possible changes in some realm of the dying person and then listing things that a caregiver can do to address them.
25. Signs that death is near
From Dying Matters, a list with descriptions of signs that indicate that death is near.

Week 6. -- The days immediately after the death

The items without a specific item number from the Action Steps handout have general information for this week and some also are useful for week 8.

5. Item 1 in Week 5
There are some details to consider back in chapter 5
5. Working With a Funeral Director: Arrangement Conferences
This page talks through various aspects of working with a funeral director to accomplish your goals for dealing with the death of a loved one. There are a lot of details here that can be of value to consider. If you read it closely, they mention a checklist; here it is as a guid for some general considerations.
What to Do When Someone Dies: A Checklist
A very helpful list that spells out many important considerations
What to do when a loved one dies
Use this checklist when needed to keep a sad event from becoming even more painful. Responsibility for the various actions can be divided among family members and close friends of the deceased.
What to Do When a Loved One Dies
A good checklist from AARP
Your To-Do List After a Loved One Dies
Although this page does not contain much detail, it does provide a good list to check against and it is worth reviewing.
After a Death Occurs: A Checklist
Although aimed at those living in the state of Washington, most of this information is applicable or transferable to any other state. This is a very thorough and complete list and worth the read.
From Probate to Social Media: What To Do When Someone Dies
More than just a list of things to do, there are also links to various utilities and services to help shut down accounts and other information that provides some guidance for the items in the list.
What to do when a loved one dies: A survivor's checklist
While mostly a bare-bones list, there are some items here that other lists don't have and I like that it is broken up into two parts with the second part being things that can be done within the first month (as opposed to very soon). It ends with some contact information. Useful site.

Week 7. -- Grieving

6. Beyond Closure: Nancy Berns at TEDxDesMoines
Ted Talk by Nancy Berns, sociologist at Drake University that addresses the fallacy of needing closure.
6. Putting the Closure on the Use of the Word "Closure" in Grief
Discussion of the concept of closure with regards to grief.
Coping with Grief and Loss
This is a helpful website that looks at grief and loss from a larger perspective than just dealing with a death. There are many useful tips that can be employed.
10 Things I Learned While Dealing With the Death of a Loved One
This is an article written by a 24-year old who talks about the spinoffs of her father's death. Caution: some coarse language in spots.
Moving Beyond Grief After Losing a Spouse
This is a thorough and thoughtful page that offers lots of information and ideas. Worth readying.
Grief: Coping with the loss of your loved one
A shorter site but it has some useful information.

Week 8. -- Transitional Issues

Go back to Week 6
Many of the lists of things to do after a death presented in week 6 actually contain items that fit the time period after the funeral. Review those as well as those below
3. Will You Need to Hire a Probate Lawyer?
This page, from Nolo (self-help books), guides one through some of the basics probate. It is a good place to start but it is important to have state-specific information as well.
4. What You Should Know About Social Security Survivor Benefits
Information about benefits to social security survivors.
8. Learn About the Taxes Due After Someone's Death
This page gives a good overview of the possible tax implications that may be relevant for someone who has to take care of the affairs of one recently deceased.
8. Filing Taxes for the Deceased -- Form 1041 and More
This page has more details of how to file form 1041, but not enough for a DYI person.
8. Death in the Family
From TurboTax, this page has some clear instructions about who needs to do what and what party is responsible for the income before and after the death.
8. About Publication 559, Survivors, Executors and Administrators
From the IRS, this page points you to a PDF, HTML, or eBook version of Publication 559, the definitive guide for Survivors, Executors and Administrators.
8. 8 Tax Issues to Consider When Your Spouse Dies
From Zinner & Co. Tax Department, this page gives some practical information on the subject of the title.
8. Filing taxes for a deceased person
From Bankrate, this page is one more related to taxes for a deceased person.