Compassionate, informed advice about healthcare decision making

Archive for the ‘Hospice’ Category

Hospice Nurse Julie Says Suffering is Worse Than Dying

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Julie McFadden was just interview by “Hospice News.” That would be HospiceNurseJulie to her 347K followers in Instagram, 1.5M followers on TikTok, and 420K subscribers on YouTube. AND she just taped a show with Dr. Phil.

Photo-courtesy-of-Julie-McFadden

Julie also has a book coming out in June, Nothing to Fear: Demystifying Death to Live More Fully.

It’s a great short interview. Here are some excerpts:

Reflecting on her work as an ICU nurse, she said, “We think [death is] the worst possible thing that could happen, and I think that causes a lot of undue suffering. And suffering to me is far worse than death.”

“I do feel like it was kind of traumatic to be an ICU nurse, at least for me. Hospice was a slower pace. I was in people’s homes. There was a lot of autonomy.”

“Even as an experienced ICU nurse, I feel like I didn’t understand the scope of how our bodies really take care of us, even at the end of life.”

[The interviewer asked] “Can you expound on that a little bit? What are some of the ways that our bodies take care of us?”

“For example, almost everyone wasn’t hungry, wasn’t eating and drinking, and they were sleeping a lot of the time.…. When you start getting towards the end of life, your body knows it. So it starts like turning off that hunger and thirst mechanism in the brain, because it knows that it doesn’t really need that anymore.”

Read it for yourself. Check it out at “Hospice News.”

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Author Chaplain Hank Dunn, MDiv, has sold over 4 million copies of his books Hard Choices for Loving People and Light in the Shadows (also available on Amazon).

Follow Hank: LinkedIn | Instagram | Facebook | YouTube

Guest on “Seeing Death Clearly” Podcast

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I am the guest this week on the “Seeing Death Clearly” Podcast with host Jill McClennen. We talk about making end-of-life decisions and my Hard Choices for Loving People book.

Here is the link to the podcast on Jill’s website: https://www.endoflifeclarity.com/seeing-death-clearly-podcast

Listen on Apple Podcasts: https://podcasts.apple.com/us/podcast/seeing-death-clearly/id1661355352?i=1000652400832

Listen on Spotify: https://open.spotify.com/show/6BxGAdDYkkfcXKue3RUQca

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Author Chaplain Hank Dunn, MDiv, has sold over 4 million copies of his books Hard Choices for Loving People and Light in the Shadows (also available on Amazon).

Follow Hank: LinkedIn | Instagram | Facebook | YouTube

Toby Keith Quit Chemo

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“I quit chemo…and it probably did more damage to me than the cancer did….” This was Toby Keith’s feelings about chemotherapy, according to his friend Brett Favre.

So, is the takeaway to never do chemo? Absolutely NOT.

Photo by Hiroshi Tsubono on Unsplash

Country singer Toby Keith was diagnosed with stomach cancer in 2021. About six months later, he announced to his fans on social media that he was receiving chemotherapy, radiation, and surgery.

“So far, so good,” Mr. Keith wrote in a June 2022 statement on multiple social media platforms. “I need time to breathe, recover, and relax. I am looking forward to spending this time with my family. But I will see the fans sooner than later. I can’t wait.”

Keith’s last concert in Las Vegas, (TobyKeith.com)

Indeed, he got back out there and played a series of shows in Las Vegas less than two months prior to his death a few weeks ago. In an interview right before he died, he said, “Cancer is a roller coaster. You just sit here and wait on it to go away — it may not ever go away.”

“[Keith] handled it with grace and faith and family and stood up to the cancer as good as you can,” said the former Green Bay Packers quarterback. “[But] I think in the end he was just tired,” Favre added.

We can hardly base treatment decisions on one man’s experience. Mr. Keith, diagnosed at age 60, made his decision based on the type of cancer he had and his own unique goals of care at that stage in the disease.

I am guessing if, during that last phone call, Favre asked, “Do you regret getting the chemo?” Keith might have responded, “Not at all.” Perhaps it bought him some time. Maybe, earlier in the treatment, he did not think it was causing “more damage… than the cancer.”

In my years as a hospice chaplain, I got to see patients after they had stopped treatments that were meant to cure the disease. Heck, you can’t get into hospice unless you stop curative treatments. Many expressed similar sentiments as Toby Keith. In medical-speak, “the burdens outweighed the benefits.” There, perhaps, was a time when the benefits were greater, but no more.

Or, to paraphrase Ecclesiastes in the Hebrew Bible, “There is a time for chemo and a time for no chemo.”

Let go and let be.

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Author Chaplain Hank Dunn, MDiv, has sold over 4 million copies of his books Hard Choices for Loving Peopleand Light in the Shadows (also available on Amazon).

Follow Hank: LinkedIn | Instagram | Facebook | YouTube

Long-distance Caregiving is Difficult: Listen to Podcast

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I am the guest this week on “The Clarity Podcast” with Aaron Santmyire. Aaron is a missionary in Africa and started the podcast to help other missionaries with issues related to their work overseas. We talk about the unique difficulties of long-distance caregiving for family members with a serious and terminal illness. We cover the end-of-life decisions I have written about in my book, “Hard Choices for Loving People.”

Here is the link to the podcast:

https://player.captivate.fm/episode/386e2924-4d3a-4759-af07-97c58ebb7461

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Author Chaplain Hank Dunn, MDiv, has sold over 4 million copies of his books Hard Choices for Loving Peopleand Light in the Shadows (also available on Amazon).

Follow Hank: LinkedIn | Instagram | Facebook | YouTube

A Cave, A Deathbed, and “How You Made Them Feel”

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“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” —Maya Angelou

1975 – Vineville Baptist, Macon, GA, youth group on retreat at Toccoa, GA. Photo by Hank Dunn

My theory about what matters most in the ministry is based directly on Angelou’s quote: It wasn’t so much what I said or did during my 50 years in the ministry. It was more about that certain “something” that made the people I worked with feel a particular way.

I was a youth minister for the first five years after seminary. I loved the work and loved “my kids.” We keep in touch in a Facebook group. I asked the group about our ministry and the Angelou quote.

Interestingly, a few noted specific things I said or some teaching from the books we read. Okay, so maybe people DO remember the things you say. One fellow, who eventually became a teacher and hospice chaplain, commented, “I don’t see it as an either/or but a combination.”

1977 – High school student on a backpacking trip into the Shining Rock Wilderness, NC. Photo by Hank Dunn

Others confirmed my theory that how people felt was most important. Another one of my kids (who also went into the ministry and travels the world training substance abuse counselors) commented:

“Absolutely. Experiences of pleasure, pain, joy, and shame have the biggest impact on the wiring of our brains and, therefore, how our souls interpret and interact with the world. Hank, you created a safe space where we could experience the joy of God and His love for us in nature, community, and individually.”

Sitting alone in a dark cave

I would sometimes take the teenagers into the wilderness as a place of ministry. We rafted on the Chattooga River, where the movie Deliverance was shot. We backpacked all over the north Georgia and western North Carolina mountains. We paddled and camped for three days in the Okefenokee Swamp. And, my favorite, we explored caves.

Part of every caving experience always included time for silent introspection. I would separate the kids along a passageway, take their lights, and have them sit alone in the darkness for 30 minutes. Recently, a participant on one of those trips shared with me the journal he kept at the time. The now-retired pharmacist wrote in 1975:

“I was really nervous before entering the cave. I never really liked the idea from the start. But when all lights were put out, I felt one of the greatest feelings of inner peacefulness and calm.”

1977 – “The Squeeze” in Johnson Crook Cave, AL. Photo by Hank Dunn

Here’s part of a report I wrote about another caving trip with junior high kids, also in 1975:

“There was one girl who was very much afraid to sit alone. I sat her down at the end of the line, where I would be close to her. After approximately five minutes in the dark, she began crying and eventually called me. I went to her, comforted her, told her I was near, and asked her to continue to sit, think, and pray as she remained in her place. She calmed down and completed the half-hour in darkness. She later revealed that it was not so much that she was afraid of the darkness but afraid to face up some of the own things in her life.”

“…people will never forget how you made them feel.”

A deathbed and the gift of presence

1990 – Fairfax Nursing Center. Photo by Hank Dunn

Fast forward 25 years, when I was a hospice chaplain. I was called to the home of a woman dying of cancer. I had made several attempts to schedule a time to see her and her family, but they were always busy and put off letting me in. Now, she was in her last hours. It was time to let the chaplain in.

When I arrived, a family friend sat with me in the living room and explained what was happening. We then went into the bedroom where the woman lay dying. Her husband sat beside her, and a nurse was not far away. I said very few words. There was little to say. I asked the husband if I could offer a prayer. He said, “Please do.” I finished my prayer, and he asked, “Can we say the Lord’s Prayer?” “Of course,” I replied, and we all prayed.

I left the bedside, and the friend followed me to the living room. I stopped to say goodbye, and this woman threw her arms around me, hugged my neck, and said, “You are so wonderful. That is just what we needed.” My first thought was, “Boy, is this job easy.” Anyone who could recite the Lord’s Prayer could have done what I did in that room. But then, I was so grateful to be invited into this moment in this family’s life.

I think Maya Angelou and I are on to something. People always remember how you made them feel.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together, they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

Lessons from Jimmy Carter’s Six Months in Hospice

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Former President Jimmy Carter continues to teach us how to age with grace and meaning. I blogged previously about his going on hospice back in February. Now, six months later, he is still alive and receiving hospice care at home.

Three lessons we can take away from this phase in his life:

  1. Hospice care can continue longer than six months

To qualify for hospice under the Medicare benefit, a physician has to say, “This patient has, at most, six months to live if the disease runs its normal course.” What happens if the prognosis is wrong and the patient is still alive after six months?

Note the caveat, “if the disease runs its normal course.” Some patients do live longer than is expected. In these cases, the hospice can re-certify that the patient still appears to have six months or less to live.

Some diagnoses are very difficult to guestimate the number of months a patient may have left. For instance, cancers are easier to give a prognosis than dementias. Doctors just do the best they can.

50% of hospice patients are on hospice care for 18 days or less.* 25% receive care for just five days or less. But there are outliers on the long end, with 10% on service for more than nine months. So, Jimmy Carter’s six months does happen more often than you might think.

  1. Hospice care is primarily delivered in the place of residence

Carter home in Plains, Georgia. Photo: Library of Congress

Many people think hospice is a place you go to die. Not true. Hospice is a concept of care. 98% of hospice care is delivered in the patient’s residence, whether that is a private home, an assisted living facility, or a nursing home.

A recent Washington Post article gave a window into life in the Carter home now.

“Jimmy Carter is often out of bed first, waiting in his recliner for his wife to emerge. ‘Rosalynn comes in the room and makes a beeline for this chair and bends over and kisses him,’ said Jill Stuckey, a close friend. They spend many hours sitting side by side.”

  1. Families usually provide most of the caregiving for hospice patients

Place: Nasarawa North, Nigeria; Feb. 15, 2007; Credit: The Carter Center

Many families are surprised that hospice does NOT routinely provide round-the-clock care. The family must provide the bulk of the care. Only 1% of hospice dollars go to what is known as “continuous care,” meaning round-the-clock.

Of course, the Carters have the resources to get the best care at home. They have other perks too. The Secret Service gave the couple a ride to watch the Fourth of July fireworks in their hometown.

Interestingly, Rosalyn Carter has had a passion for providing support for family caregivers. When The Carter Center announced that Mrs. Carter was diagnosed with dementia, they commented, “As the founder of the Rosalynn Carter Institute for Caregivers, Mrs. Carter often noted that there are only four kinds of people in this world: those who have been caregivers; those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Thank you for your service

The Post asked people who knew them what makes the Carters keep going. “Gerald Rafshoon, who was Carter’s White House spokesman, and others believe a key reason the Carters keep going is that neither wants to leave the other.”

The Carters have lived a life of service and continue to provide an example of how to approach the last days. Thank you, Jimmy and Rosalyn!

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*Statistics in this blog came from the National Hospice and Palliative Care Organization’s “Facts and Figures, 2022 Edition.”

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

25 Years for This?

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[Note: I wrote this 25 years ago, reprinted here.]

June 3, 1998

This morning was little different at the office than other mornings. I am on the West Team of the Loudoun Region of the Hospice of Northern Virginia. The West Team occupies one room on the second floor of a two-story townhouse office in Leesburg.

Hank at Grief Camp for Children, 1998

Now, get this picture. On the West Team are five nurses, three social workers and one chaplain. In our room are six desks and five phones. No desks are assigned. First-come, first-served. We do not spend a lot of time in the office because we mainly are on the road visiting patients. Yet, most of us start our day there. Can you see where this is going?

I got there a little late today and I was lucky. I got a desk but, alas, it was the one without the phone. It does have a view — into the back yards of townhouses. I am close to my colleagues — Kelly was about two feet to my left and Pam equidistant to my right.

We all talked about Nelia, who had to pull her hair back because she was going to see Sara who didn’t like Nelia’s hair falling in her face as she cared for Sara. We are part of each other’s conversations, each other’s space, each other’s work lives.

Ordained June 3, 1973

Hank’s ordination Bible, 1973

It struck me this morning, and I announced to my friends at work, I was ordained to the gospel ministry twenty-five years ago today. It took place at the St. Matthews Baptist Church in Louisville, Kentucky on the same weekend as my graduation from seminary. The pastor who led the service left Louisville to pastor the largest church in North Carolina. He called me a year later and asked if I would come to be his youth minister. I didn’t. He eventually left the ministry. Something about an affair. Last I heard he was selling cars.

And me? After twenty-five years in the ministry? I have made it all the way to — sharing phones, sharing desks, views of townhouse backyards and having to turn in a time sheet every day with my documentation or I don’t get paid.

“Success” in the ministry

Hank (right) with seminary friends. In this photo are two future seminary presidents, one future pastor and one future hospice chaplain.

This is unlike one of my best friends during seminary days who went on to get a Ph.D. from Cambridge and is now president of the largest seminary in the world. Others from our class pastor big churches. I report to the senior social worker who reports to a vice president who reports to a president who reports to a board of directors. I am pretty far down on the food chain.

Here I am, a fifty-year-old, making less than many new college graduates earn. I have come all this way in the ministry, following my call only to find myself doing what any seminary student could do. I don’t know. I’m not feeling sorry for myself. I was just struck with the irony of the celebration of the 25th anniversary of my ordination and having to borrow a phone to make a call.

I think probably my classmates and I all imagined as we left seminary that in twenty-five years, we would have a private office with a secretary or at least a phone. That’s how we keep score in our society — how much money I make; how much of the trappings of success do I have, like a beautiful office; how many employees I supervise; or, what kind of car I drive.

Less is more

But, you know — this lack of having an office is so much better. I have had to narrow my essential papers down to two notebooks that I can carry anywhere. If I had an office, I would have piles of clutter everywhere. And not having an office says to me my work is not at a desk anyway — it is with the people — and sick and dying people at that.

I think I remember something Jesus said about foxes having holes, yet the Son of Man has nowhere to lay his head. I guess Jesus didn’t have an office either.

Hank

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

In Hospice, Jimmy Carter is NOT Giving Up On…

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As I write this on February 24th, former president Jimmy Carter is at home under hospice care.

The popular story is that Carter had a failed presidency, but post-White House, he was the most successful ex-president ever. Now, 42 years after suffering a landslide defeat to Ronald Reagan, some have changed the first part of that narrative by seeing strength in his single term in office.

Place: Savelugu, Ghana, Date: Feb. 8, 2007, Credit: The Carter Center

In his years after leaving Washington DC, Carter traveled the world serving the poor by bringing healthcare to underserved areas and building houses. His work also included building democracies by helping nations hold free and fair elections. Oh yeah — when he was home in Plains, Georgia, he also taught Sunday school at the Baptist church.

I expected the media to perpetuate a hospice misconception — one of my pet peeves — and they did not disappoint. On ABC World News Tonight this past Monday, David Muir read the teleprompter, “Carter will forgo medical intervention receiving hospice care at home.” I felt like yelling at the TV, “Hospice care IS a medical intervention.” But I didn’t.

Even the announcement of this news from the Carter Center alluded to this mistaken belief. “After a series of short hospital stays, former U.S. President Jimmy Carter today decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention.”

Here is what this unfortunate wording insinuates: You seek medical care for a cure. You give up medical care and choose hospice care when you are dying.

Hospice care is one of the best medical interventions you can have. Hospice focuses on the patient, not the disease. The goal is to comfort by any medical means necessary. Hospice care also concentrates on supporting the family as well as the patient.

Place: Austin, Texas, Date: 2014, Credit: LBJ Library

The Carter Center’s announcement also reveals how so many people turn to hospice “After a series of short hospital stays.” I don’t know if these hospital stays were for treatment of the former President’s cancer or if he had another fall. Often when a patient is aging, frail, and seriously ill, patients and their families will eventually conclude, “No more trips to the hospital.”

This is how it should be. There is nothing wrong with seeking medical intervention at the hospital when needed. I also know that some people go to the hospital to die, not wanting to burden the family by dying at home. But most people say they would rather die at home with their family gathered around them if given a choice.

Thank you again, Mr. Carter, for showing us a way to peace.

Cover photo: Place: Nasarawa North, Nigeria; Feb. 15, 2007; Credit: The Carter Center

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

Does Hospice Hasten Death? Some say “yes”— Most say “no”

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Boy, was I blindsided?

I posted a quote from a study that examined the general public’s understanding of hospice on my Hard Choices for Loving People Facebook page. 30% of the respondents said they felt hospice hastens death. My Facebook post got hundreds of likes and comments, a lot of traffic for my humble page. I had no idea this would engender such a strong response.

“This morphine is wonderful”

Misconceptions can be based on misconceptions. When people hear that a friend is receiving morphine, they automatically think death is near. Not necessarily. Because of this close association of morphine with death and the association of getting on morphine in hospice, many assume that’s what hospice does — hastens death. Not so. Morphine controls pain and relaxes breathing.

I had an elderly patient once who was dying of respiratory failure. She was so short of breath that it was a major chore for her to move from her bed to a chair. She got great relief from morphine which she took for months before dying. She told me once, “I’ve always been opposed to drugs, but this morphine is wonderful.”

The coincidence of death after morphine

Many of the respondents to my post who agreed that “hospice hastens death” told stories of family members going on hospice and dying soon after. Why should this surprise us? Hospice requires that a patient is within six months of dying, although the average patient is only on hospice for two weeks.

I am sure it is just a coincidence that a patient receives a dose of morphine and dies shortly after. The family then thinks, “she died because they gave her morphine.” She did not. She was on hospice because she was dying, and she just happened to take her last breath after taking morphine.

No incentive for a hospice to hasten death

It makes no sense that hospice would want to hasten a patient’s death. The more days the patient is on hospice, the more reimbursement the hospice receives. It is totally against their financial interest to hasten death.

Hospices also want to make sure their patients are as pain-free as possible. Families of hospice patients fill out surveys after the death of their person. They rate the hospice on pain control, among other items.

So, yes, hospices use morphine to keep patients comfortable, not hasten death. They want to have the patient as long as a natural dying process will allow, and they want favorable survey results.

The research is clear; patients live longer on hospice

Many studies confirm that hospice patients live longer than nonhospice patients suffering from the same disease. One study looked at dementia patients. On average, the patients on hospice lived longer than those who never entered a hospice program.

Another study looked at five different kinds of cancer and congestive heart failure. Once again, the patients who were under hospice care lived longer than the nonhospice patients.

So, rest easy. If you have a life-limiting illness and want to live longer with a better quality of life, go into hospice as soon as possible.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

She Fasted to Hasten Death — VSED

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Rosemary Bowen was not terminally ill. She hastened her death by fasting. It took seven days.

Ten states and the District of Columbia allow for “medical aid in dying” (MAID). In those jurisdictions, terminally ill people with six months or less prognosis can get a prescription for a lethal medication in order to hasten their deaths. But what about patients not in one of these states or those whose life expectancy is greater than six months? VSED is an option.

Voluntarily Stopping Eating and Drinking (VSED) can be practiced by those seeking an earlier death. It’s what Rosemary did.

Rosemary Bowen, at 94, was living independently. She said she had had a wonderful life and did not look forward to a long, slow decline toward death. For years, she had been telling her children, “That her life would not be worth living if she had to depend on caretakers to feed her, dress her, and take her to the toilet.” Then, it happened. She fractured her back and went to rehab but was unable to live independently. That was enough for her.

Rosemary asked her daughter to video her so she could show others how to take control of their dying with VSED. The 16-minute video is available on YouTube.

VSED is a legal and, in my view, a morally acceptable way to end one’s life. It is based on several established principles in medical ethics. Affirming “autonomy” we allow patients to make decisions to reject any medical treatment — even treatments that could potentially save one’s life. Also, medically-supplied nutrition and hydration (for example, by a feeding tube) have long been understood to be a treatment that could be refused.

What Rosemary did was take these one step further as she choose to refuse food and water. She did this basing her decision on her own values:

  1. She valued independence above all else. Being dependent on others was an unacceptable quality of life.
  2. She did not want to be a burden on her family.
  3. She did not want to go the route of many of her friends who spent years declining in assisted living or nursing homes, facing one medical setback after another.

The importance of medical support during the process

Do not try this without medical support. Rosemary was able to get a hospice to care for her in her last days. Palliative care is also available to ease burdensome symptoms like pain and thirst. See “VSED Resources Northwest” for help with choosing this option.

“I am leaving life with great joy,” she says in the video. “I can’t tell you how content I am. I recommend it highly to do it this way.… The price of staying alive is having to live without quality and joy.… I feel so privileged to be exiting life like this and think of all the people who are wringing their hands and saying if only God would take you and all they need to do is give God a little help by holding back eating and drinking.”

At one point in the video, she is on the phone saying goodbye to friend. As she signs off, she says, “I’ll see you in heaven.”

Indeed.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

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