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Archive for the ‘Advance Care Planning’ Category

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.

VSED by Advance Directive — An Alternative to Prolonged Dying

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Margot Bentley

Margot Bentley did not want to spend her last days in the way she spent her last days. Hers was a fate almost all of us wish to avoid. She told her family her wishes, and she put them in writing. Yet, Voluntary Stopping Eating and Drinking by Advance Directive (VSED by AD) did not work for her.

In my last blog, “She Fasted to Hasten Death — VSED,” I introduced the idea of VSED. It is a legal and morally acceptable way to hasten death when faced with a terminal or chronic illness one finds unbearable. This option is only open to people with the presence of mind to notice that they are in a state they would consider intolerable.

As a nurse, Margot Bentley cared for many patients in the advanced stages of dementia. She let her family know, and put it in writing, that if she ever progressed to severe dementia, she would like hand feeding withheld to allow her to die a natural death. When that time came, her family asked the care facility to honor their mother’s wishes and stop the hand feeding.

The facility refused, saying that Mrs. Bentley indicated she had changed her mind because she opened her mouth and received food offered to her.

Advanced-stage dementia patients may:

  • Require around-the-clock assistance with daily personal care.
  • Lose awareness of recent experiences as well as of their surroundings.
  • Experience changes in physical abilities, including walking, sitting, and — eventually —  swallowing.
  • Have difficulty communicating.
  • Become vulnerable to infections, especially pneumonia.

Source: “Stages of Alzheimer’s,” Alzheimer’s Association website

Everyone I know would like to avoid ending their days lying in a nursing home bed, unable to recognize family, dependent on others to wipe their bottoms, and help with all activities of daily living. People can live for years in this final stage of dementia. I have told my family to stop hand feeding when my time comes.

Margot Bentley’s family had to navigate the court system in British Columbia to try and comply with their mother’s expressed desire. The courts denied their request.

VSED by AD: A new frontier of end-of-life care

I have been chaplain for several patients who were allowed to die a natural death after the cessation of hand feeding. The families were convinced that their person would not want to be sustained by even hand feeding. Their deaths were peaceful within days of the withdrawal of food and water.

From: End of Life Choices NY advance directive

All these patients were in the most advanced stages of dementia. Even hand fed, these patients would probably not have lived more than a few months. I would have felt better had the patient left written directions, such as a living will or other advance directive. But these families felt certain they were requesting what the patient would have wanted if they could have spoken.

Here are links to three websites that provide information on VSED by AD; each includes a sample form:

End of Life Choices, New York

Final Exit Network

The Dartmouth Dementia Directive

I personally would like to avoid a prolonged dying from dementia. I want to spare my family the expense and emotional toll of watching me die by inches. I know it will be hard to invoke my advance directive, yet, they will have confidence that this is the way I want to go.

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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.

I’m On a Podcast This Week

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I am interviewed by Dr. Saul Ebema on the “Hospice Chaplaincy Show” this week. He has a great podcast for hospice chaplains that I listen to regularly. Click here for access to the show.

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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.

Canada vs. U.S.A. at the End of Life

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Me: “Hello, this is the chaplain, Hank. I would like to come by your home for a visit Tuesday, at 10. Would that work for you?”

Patient: “Oh, hi… (pause) No, not then. How ‘bout Thursday at 10?”

Me: “Great, see you then.”

I thought of this conversation as I was digging down into a Canadian governmental report.

Why are we so different than our Canadian neighbors? We share a 5,525-mile-long border yet, in response to one question, we are miles apart. Do we really live and die that differently?

I have this nerdy side of myself. I read through medical journal articles and government reports looking for insights into all things end-of-life. The government of Canada and the State of Oregon recently released their annual reports on Medical Assistance in Dying (MAID) or, in Oregon, Death with Dignity. These are the rebranded names for what used to be called Physician Assisted Suicide.

One number jumped out

End-of-life concerns: U.S.A.

End-of-life concerns: CANADA

I’m reading through these reports and one number jumped out at me. Physicians who aided these terminally ill patients in hastening their deaths with medications were asked, “Why did the patient want to end their life by taking a lethal medication?”

In Oregon, the number one reason out of seven choices that patients gave was concern over “Losing Autonomy.” 93.3% of these patients listed that as one of their end-of-life concerns. In Canada, at the BOTTOM of a list of eleven possible concerns, “Loss of control / autonomy / independence” is only mentioned by 1.7% patients.

My interest was piqued by that “autonomy” difference. So, I contacted my friend, Tim Ward, who is now writing about his travels in Europe. He and his wife are taking “senior gap year” as in “senior citizen gap year” traveling. Tim is a Canadian by birth and has recently become a U.S. citizen.

He emailed back from Paris, “It might be that in Canada, autonomy is less of a value than, say, meaningful social connection” and “the rugged individualism of the West is part of eastern Oregon’s make up.”

Individualism/Autonomy vs. social connection

I think he is on to something here. For example, the social connection vs. autonomy shows up in how we provide healthcare. In the U.S. we do not provide universal healthcare, Canada does. There is no for-profit health insurance industry in Canada, yet everyone has access to healthcare. The U.S. system is built upon a for-profit system that leaves 8.6% (28 million) of our fellow citizens without health insurance. How we provide healthcare is just the most glaring example of how we value individual choices over the common good. Also, the social safety net is very weak for the poorest among us in the U.S. — as we witnessed in the pandemic.

I got curious about where in the world people are the happiest. Turns out, Canada (#15) and the U.S. (#16) show up next to each other in a recent ranking of the happiest countries. The top countries are in northern Europe.

From the Gallup World Poll report, “[Finland] and its neighbors Denmark, Norway, Sweden and Iceland all score very well on the measures the report uses to explain its findings: healthy life expectancy, GDP per capita, social support in times of trouble, low corruption and high social trust, generosity in a community where people look after each other and freedom to make key life decisions.”

Critics would say that’s true, they may be happier, but they pay very high taxes. The countries highest on the “Happiest” list are often labeled as “socialist” by those same critics. That’s a discussion for another time and place. The point here is that the autonomy cherished by U.S. citizens shows up in less “social support.”

The myth of the cowboy

Photo by Taylor Brandon on Unsplash

Tim’s other point, about “rugged individualism,” caught my eye because of another nerdy side of me — I read books about the American South and how we got the way we are down here. Currently, I am into How the South Won the Civil War: Oligarchy, Democracy, and the Continuing Fight for the Soul of America by Heather Cox Richardson.

Richardson is a historian with 1.6 million followers on Facebook. She writes on that platform often and produces long videos discussing various history-related topics. In this current book she explains the growth of the “myth of the cowboy,” the ultimate “rugged individual.” According to her, since the late 19th century, Americans have bought into this idea that anybody can attain whatever they want, that this country was built by autonomous “rugged individualists.” This is a myth because wealth actually went to a few elites from the days of the Founders to today.

Our founding documents lay out this contradiction in spades. The same property-owning White men who wrote, “All men are created equal,” enslaved Black people and did not give women or poor Whites a vote. We, as a nation, have been struggling with this contradiction ever since. Although Canadians do not have the history of slavery we do, we both share shameful treatment of indigenous peoples. Also, a discussion for another time and place. The point here is lionizing the “rugged individual” can show up as valuing autonomy at the expense of social connection.

Pastoral care at the end of life and autonomy

The phone exchange with the patient was typical of many we had over the months I was his chaplain. He ALWAYS chose another time. As a chaplain for those at the end of their lives I am always looking for ways to enhance autonomy, because I know it is so important to most of us. I gladly changed my plans. I figured this was my little way of affirming his autonomy.

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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.

“How effective is chemotherapy?” — That is the Question

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Would you spend $100,000 on a cancer treatment with many painful side effects that might help you survive 6.24 months as opposed to 5.91? That is 10 days longer in greater pain and suffering?

What if the doctor told you just that “this treatment will help you survive longer”? This is a true statement even though you might only survive 5.6% longer. That IS longer.

I have just discovered two great videos with Dr. Michael Greger discussing this very topic. Each video is less than seven minutes and worth every minute of your time. One is called “How Effective is Chemotherapy?” and the other is “How Much Does Chemotherapy Improve Survival?”

Let me be clear. I have no idea what I would do if I had a cancer diagnosis. I have close friends and family members who had advanced cancers and have been treated very successfully and are living active lives years after their treatments.

On the other hand, I have had patients, and, again, close friends and family members who received brutal chemotherapies and died. Many of those seemed to have received no benefit from their treatments and suffered great burdens. Many patients go bankrupt in order to pay for treatments.

Dr. Greger, in the first video says, “A large proportion of cancer patients reported their willingness to declare bankruptcy or sell their homes to pay for treatment. I mean, look, aren’t the high prices justified if new and innovative treatments offer significant benefits to patients? But you may be shocked to find out that many FDA-approved cancer drugs might lack clinical benefit.”

In his second video he referred to a study reported in the Journal of the National Cancer Institute. “In fact, the most expensive drug they looked at, the one costing $169,836 a year, did not improve overall survival at all, and actually worsened quality of life. That’s $169,000 just to make you feel worse with no benefit. Why pay a penny for a treatment that doesn’t actually help?”

I am NOT giving medical advice here. I am encouraging all of us to ask questions of our physicians. If a recommended therapy is said to improve survival, ask, “How much improvement?” Is it just 10 days over six months while suffering uncomfortable side effects? Ask about cost. Would I be willing to spend my financial legacy for those 10 days?

This all reminds me of the importance of our own emotional and spiritual preparation for dying. When “our time” comes we will be ready to die… or be healed. Either way, we’re okay.

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Cover Photo by Marcelo Leal on Unsplash

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.

Being Sued for SAVING the Life of a Patient

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“I’ll drag mother down to my car and take her to the emergency room myself,” she told me.

The patient had left verbal and written instructions that she did not want to have life-saving treatments when she was dying. A “No CPR” order was on her chart. Knowing her daughter’s feelings, the old lady chose her son as her power of attorney. She conspicuously omitted any mention of her daughter in the document.

I met this patient, her son, and daughter while I was a nursing home chaplain. By that time, the patient had severe dementia, so healthcare decisions were in the hands of the son. The daughter commented about taking her mom to the emergency room in one of our earlier conversations.

A recent issue of Hospice News featured a story about how healthcare institutions are open to lawsuits if they do not honor a patient’s wishes to refuse life-sustaining treatment. We almost always think it is the right thing to save a life. But there are cases of “wrongful life.” That is, saving a patient’s life who had chosen to let a natural death happen.

As it typically happens, the nursing home patient I ministered to went into a slow downward decline. Even the daughter eventually realized that when her mother’s heart finally stopped, it was time. Thankfully, there was no schlepping the poor old lady into the car.

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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.

On The Other Hand, “I don’t want to die at home.”

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Conventional wisdom says, “A good death is at home with my family gathered around me.”

An alternative view says, “I don’t want to die at home.”

How many times have we seen in an obituary, “He died peacefully at home with his family gathered around him.” Families wear this as a badge of honor. They provided the best of care and met the patient’s wishes to remain at home.

Home is generally considered the preferred place to die. For the first time in generations, more people are dying at home than in the hospital*. I have seen some studies that consider dying at home, as opposed to dying in the hospital, as a “good outcome.”

“Not so fast, my friend.”

“Not so fast, my friend,” as Lee Corso would say on College Game Day. Many people die away from home by choice. As I said in a previous blog, there are some people who just feel more comfortable dying in the hospital. Some families do not want to live in a home where a family member died.

I have a friend who is in his 70s and his preference is to die away from home. He is in a second marriage, this time to a widow. He does not want to put his wife through the caregiving burden again.

Besides, he told me, he has so far paid for long term care insurance for years and would hate for all that money to go to waste. With the insurance, he is prepared financially to live for years in assisted living or a nursing home. “I will not put her through that again,” he said.

*See a recent article in the New England Journal of Medicine, “Where Americans Die — Is There Really ‘No Place Like Home’?”

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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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Cover Photo by Zac Gudakov on Unsplash

Not much has changed in 40 years — My radio interview

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Are people more willing to have a conversation about end-of-life planning today than they were in the 1980s? That was Jeanne McCusker’s opening question as she interviewed me for her weekly program, “A Graceful Life.” What was I to say?

Jean McCusker, host of “A Graceful Life”

I had to admit, “Not much has changed.”

Why? Why, in almost 40 years, has not much changed about end-of-life conversations?

Dying is very personal. You only die once. Although you may get some experience making healthcare decisions for others, like your parents, that is still limited experience. Every end of life is unique. We may have made great strides toward facilitating more peaceful deaths, but each person still faces their death anew.

Hospice and advance directives have not guaranteed peaceful deaths

I do think healthcare professionals and healthcare systems are better today. Take hospice, for example. Medicare started the hospice benefit in 1982. Since then, hospices have grown exponentially. Now, almost everyone knows stories of good hospice deaths. About half of the people who die on Medicare receive hospice care.

Sadly, if you dig down into those numbers, over one-quarter of those on hospice were there less than a week. In other words, they waited until the “last minute” to receive this vital service. Hospice professionals know it is hard to provide the best comfort-focused end-of-life care in less than a week.

Another change in the last 40 years has been the increased use of advance directive documents like living wills and durable powers of attorney for healthcare. About half the adult population now has such papers.

Again, all this paper has not improved how well we die. An important article in JAMA last fall questioned whether the emphasis on these documents has led to improvements in end-of-life care. Healthcare professionals might want to listen to a recent GeriPal podcast on this very topic. Just having a piece of paper does not guarantee a peaceful death.

I came to the end of the interview repeating what I often say, “End-of-life decisions, for patients and families, are mainly emotional and spiritual. The big question is, ‘Can I let go?’” THAT truth has not changed. Letting go and letting be can still be difficult.

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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.

 

You Can Never Make a Wrong Decision

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“I made a mistake. I made the wrong decision,” the wife of the recently deceased man said.

Several years ago, I spoke at the Centra Hospital in Lynchburg, Virginia. There were about 50 people in the room, including members of the clergy, physicians, nurses, social workers, and just plain folks. I divided my presentation, the first half devoted to helping patients and families make end-of-life decisions, and the second half to the emotional and spiritual issues at the end of life.

When I invited the audience to speak, a lady raised her hand and told her friend’s story. Her friend’s husband had been in a nursing home and on a feeding tube. He was not considered to have the capacity to make his own medical decisions, so all the medical treatment decisions rested on his wife.

On more than one occasion, the patient pulled out the feeding tube. This lady suggested to her friend that perhaps her husband was saying he did not want the feeding tube. Her friend always responded, “He doesn’t know what he is doing.” They always reinserted the tube and resumed the feedings.

“I should have left the tube out and let him die sooner.”

About six months after the patient died, the lady visited her friend. The now-widow said, “I made a mistake. I made the wrong decision. I should have left the tube out and let him die sooner.”

At times, I have heard other family caregivers express similar regrets about decisions made. “We shouldn’t have sent mom back to the ICU.” “I wish we had never started the feeding tube.” “We kept the chemo going way too long.”

You can never make the wrong decision

When I hear remorse like this, I always tell people, “You can never make the wrong decision. You make the best decision you can with the information you have at the time.” In my 28 years of being close to decision-makers, I have never thought someone made a decision intending to harm a patient. People always want the best for the patient. It is only in looking back that they say a decision was a mistake.

I even say “you can’t make a wrong decision” to people in the throes of a decision-making process. I hope to ease the burden they are placing on themselves. These choices can be hard enough. I want to assure these burdened families they can’t make the wrong decision. You just do the best you can with the information you have at the time.

[A version of this blog post appeared in 2011.]

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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.

Photo by Nik Shuliahin on Unsplash

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