Sweden and Covid 19: Families Complain That “Palliative Care” Instead of Treatment Is Being Given to the Elderly

A June 18, 2020 article in the Wall Street Journal titled “Coronavirus is taking a high toll on Sweden’s elderly. Families blame the government”  starts with a disturbing story:

“When 81-year-old Jan Andersson fell ill with Covid-19 at a nursing home in the Swedish town of Märsta, a doctor consulted by phone ordered palliative care, including morphine, instead of trying to help him fend off the infection.

Mr. Andersson’s son, Thomas Andersson, says he was told his father was too frail for other treatment. The younger man disagreed and, after arguing with the physician, summoned journalists and insisted his father be given lifesaving care. Mr. Andersson has since recovered.

The county that runs Mr. Andersson’s nursing home said all decisions on medical treatment for the residents were made by doctors employed by a company that provides medical services. (All emphasis added)

The Wall Street Journal reports that cases like this have sparked a public outcry from not only relatives but also from some doctors and nurses. There is now an investigation by Swedish national health-care authorities into the treatment of older patients in nursing homes and Stockholm hospitals. There are now 5,041 people in Sweden who have died from Covid 19 with about half being nursing home residents.

“Many people have died unnecessarily,” said Yngve Gustafson, a geriatric-medicine specialist in Sweden, who looked into more than 200 cases in which people were denied care. He said that doctors were too quick to put patients on palliative care. He also said that he believed many would have survived and lived year longer had they been provided basic care.

Furthermore, a June 12, 2020 British Medical Journal article “Has Sweden’s controversial covid-19 strategy been successful?” stated that Dr. Gustafson also spoke to the Svebsja Dagbladet newspaper and “expressed concern about the increasing practice of doctors recommending by telephone a “palliative cocktail” for sick older people in care homes.

He also was quoted as saying:

“Older people are routinely being given morphine and midazolam, which are respiratory-inhibiting,” … “It’s active euthanasia, to say the least.”

Thomas Linden, chief medical officer of Sweden’s National Board of Health and Welfare, said the triage guidelines for Covid 19 were developed to prepare the health-care system for a potential crisis while ensuring best-possible treatment for all patients.

However, the Wall Street Journal article reports that Swedish critics say these guidelines have too often resulted in older patients being denied treatment, even when hospitals were operating below capacity.

“Dr. Cecilia Söderberg-Nauclér, a physician at Karolinska University Hospital in Stockholm, said that “the ICU wards were comparatively empty “because elderly people were not taken to hospitals—they are given sedatives but not oxygen or basic care.”

The Wall Street Journal article also notes that “About 90% of nursing-home residents who succumbed to Covid-19 in Sweden were never admitted to a hospital, according to official estimates. ” (Emphasis added)

Most poignantly, Latifa Löfvenberg, a nurse  for a company providing medical services to several nursing homes, said she sought treatment for residents with Covid-19 and was told by company physicians to administer morphine and a sedative.

She  described what happened:

People suffocated, it was horrible to watch. One patient asked me what I was giving him when I gave him the morphine injection, and I lied to him,” said Ms. Löfvenberg, who is now working at a hospital in the Swedish capital. “Many died before their time. It was very, very difficult.” (Emphasis added)

COULD-OR HAS-THIS HAPPENED IN THE US?

As I wrote in my May 20, 2020 blog “Covid 19 and the Culture of Death” about the dangerous and unethical responses to Covid 19 in the US:

“(T)he National Hospice and Palliative Care Organization (NHPCO) has a new resource for Crisis Standards of Care for the “ethical allocation of scarce medical resources during a disaster” that:

‘provides a framework for healthcare professionals to utilize a predetermined framework to determine which individuals will receive life saving care during an emergency event or disaster and which ones will not.’ With the event of the COVID-19 Public Health Emergency (PHE), it is important for palliative and hospice care providers to be familiar with Crisis Standards of Care.” (Emphasis added)

However, access to the actual crisis standards is restricted to NHPCO members only.

But transparency is not the only  problem.

Unfortunately, I have also personally and professionally seen cases of deliberate overdose sedation. I have written about this, most recently in my 2019 blog When Palliative Care goes Horribly Wrong”.

CONCLUSION

While Sweden has not yet legalized physician-assisted suicide, Sweden’s National Board of Health and Welfare did authorize passive euthanasia in 2010, whereby “patients may request the termination of their treatment knowing that this will lead to their death”. This ruling came in response to a request by a 32 year old woman who was totally paralyzed and dependent on a ventilator since the age of six. She requested it be shut off when she was asleep. Whether or not she received a “palliative cocktail” beforehand is unknown.

Now, Swedish officials seem to have forgotten the part about “patient request” when it comes to Covid 19 and the elderly.

In the US, we started down a similar path when “right to die” groups focused on “living wills” and withdrawal of even basic treatment before outrightly promoting physician-assisted suicide.

The bottom line for any country is that we must not lethally discriminate against anyone, regardless of age or condition like Covid 19 and we must hold palliative care to the high standards set by the late Dame Cicely Saunders,  founder of hospice movement (1918 – 2005) who said:

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.” (Emphasis added)

 

 

 

Coping in the Time of the Covid 19 (Coronavirus) Pandemic

Although we are in a time of national crisis that is causing disruption in all of our lives, we need to avoid panic and foster realistic optimism and resolve in ourselves and others. We are all in this together.

As a semi-retired nurse, I have been following the Covid 19 situation closely. We and our extended family and friends keep up with and strictly follow the sanitary and social isolation recommendations. If we all follow these precautions, this crisis may begin to abate in hopefully weeks or months.

There is cause for cautious optimism. Although the numbers of people infected will increase with more testing now available, most people will not die from Covid 19 and many will have no or mild symptoms. And a promising experimental vaccine against the Covid 19 virus has been developed in record time and is now being tested on humans. However it may take a year or more to prove its effectiveness. We must be patient.

Even better, a FDA drug long used to treat malaria has shown promise in treating Covid 19 patients in other countries and a clinical trial of the drug will start here.

However, the Covid 19 virus has and will continue to have an enormous impact on our lives for the foreseeable future not only in our homes but also in our work lives, education, the economy and the health care system.

But, as frightening as this crisis is now, in the end it may help us reorder our priorities from materialism and political/social divisions to a new appreciation for our families, our country and our ability to work together for the greater good.

One of the advantages of being older is that I am old enough to remember the polio virus epidemic in the 1950s that struck so many children and caused panic in my own parents until Dr. Jonas Salk developed a vaccine. As a nurse, I also remember the terrible AIDS virus epidemic in the 1980s and 1990s that killed so many people and even became the “poster child” for legalizing physician-assisted suicide until an effective treatment was developed in 1997. And I remember the relief and joy when the polio vaccines and AIDS treatments were found.

Like AIDS, polio and other deadly infections in the past, the Covid 19 crisis will also eventually pass. I recently asked my wonderful 97-year-old friend “Melissa” who lived through World War II about how people got through those terrible years of turmoil and sacrifice. She seemed surprised by the question and said, “We just did what we had to do”. No wonder she is one of those people now celebrated as the “Greatest Generation”  with the values of  “personal responsibility, duty, honor and faith.”

Those values are just as important today.

FIGHTING WORRY AND FEAR WITH GRATITUDE

In our current crisis, one way we can help ourselves cope is by being grateful for the often unrecognized blessings we do have. Gratitude is a potent antidote to the panic, worry and fear that can infect us, our loved ones and others.

So I am grateful that we live in a time when computers, smartphones (especially with text and FaceTime) and other devices that are available to most people now. How much worse would social isolation and access to critical information be in the past without these devices?

Personally, I am grateful that our grandchildren have access to online learning after their schools closed and that some of our adult children are now able to work by computer from home.

I am also grateful for my religious faith that encourages trust in God, prayer, hope and helping the less fortunate in times of crisis. And I am grateful that even though churches and other places of worship are closing, religious services and inspiration are easily available online or on television. And I am inspired by the efforts of religious groups like the St. Vincent DePaul Society that never stop caring for the less fortunate no matter what the crisis.

I am also grateful that I am healthy enough to help my more elderly or infirm neighbors by picking up items from the store or even just calling them on the phone to chat. We can all look for ways to help our community without endangering ourselves or others such as ordering take-out food from small businesses that had to close their dining rooms and lay off workers. I have always found that helping others promotes happiness and optimism in both the person receiving help and the person giving the help.

I am grateful for my husband and family, especially now that we are grandparents who can help care for our grandchildren-particularly those who are out of school and have (thankfully) working parents. In times of crisis, we have a great opportunity to get closer to all our loved ones and the entertainment value of family alone is worth it.

All of us should remember that it’s the tough times that strengthen us most. We have a duty to set a good example for our families and our nation so that when the crisis is behind us, we all will be kinder, wiser and better people in the future.

 

 

 

 

 

A Very Special 6th Birthday Party

Recently, I was invited to a 6th birthday for a special boy.

“John” (as I will call him for privacy reasons) was born a healthy baby boy. But when he was a few months old, he stopped breathing and 911 was called. Apparently, John had a near-SIDS (sudden infant death syndrome) event.

John was resuscitated but the doctors in the emergency room told the parents that he had severe brain damage.

John’s mom was a special education teacher and told the doctor that she often cared for severely brain-injured children and would do the same for her son. She was just so glad he survived.

I was called about John to help with information and support.

At one point months later, John became critically ill and was hospitalized. The doctors did what they could but said his chances of survival were bleak.

However, John surprised us all by getting better and going home. He was tough!

It takes a lot to care for a child on a ventilator and feeding tube at home but John’s parents were up to the task, along with help from their church and family members. John’s family later expanded when his two younger sisters were born. They obviously love their big brother.

When John had his 6th birthday a few weeks ago, it was a joyous occasion with family and friends. I was delighted to be invited. Although John is still severely brain-injured and still on a ventilator and feeding tube, he spent much of the party cuddled in his grandfather’s arms. He was the center of attention.

John’s grandfather told me about his brother who was born with cerebral palsy decades ago. The family was told that he would not live long but with supportive siblings and parents, the brother lived a good life until he died at age 60. The grandfather is still proud of his brother.

CONCLUSION

When my Karen was born with Down Syndrome in 1982, I didn’t really know what to expect and I was shocked by negative attitudes-even from her medical professionals.

But that was wonderfully counteracted by the other parents in the St. Louis Down Syndrome Association who told me how their child was a blessing and how that child opened their hearts and eyes. I was awed by these other parents’ concern, help and support for my daughter and our family.

I later asked these amazing parents if they were like this before their child was born. Every one of them said no and that it was their child that led them to open their hearts and eyes.

I eventually discovered how true this is even though my Karen only lived 5 1/2 months and I’ve been blessed by meeting other children with special needs and their parents.

Too often, people assume that a child with special needs is automatically a family tragedy.

The truth is that children with even severe disabilities can teach the rest of us so much about love, acceptance, true happiness and resilience.

And, of course, faith.

 

 

The Power of Memories

Back in the 1990s when I was a home health/hospice nurse, one of my most memorable patients was a woman I will call “Georgia”.

When I was assigned to Georgia, I was told that she had terminal lung cancer but did not feel well enough to get to her doctor visits and the doctor wanted us to find out what she needed since she did not want to be hospitalized.

I was surprised to find Georgia, her husband and 2 dogs were living in a small camper attached to a pickup truck on the gravel banks of a small river about 50 miles from St. Louis.

Georgia was a dignified and very thin older woman with a look of profound sadness in her eyes. She was getting oxygen for her shortness of breath and effective pain medication but her main complaint was unremitting nausea. Her husband was friendly and anxious to know what he could do to help his wife. Both knew her diagnosis was terminal.

Because of years working with cancer patients, I suggested a new anti-nausea regimen that Georgia’s doctor had never heard about. He checked with a pharmacist and we started the regimen. It worked well.

With her symptoms now under control, Georgia finally spoke about her fears for herself and her husband. I was able to reassure her about measures to make her comfortable and other end of life concerns but she still seemed sad.

I also found out that they moved to the little camper on the river after their home was burned to the ground. That loss was devastating for both of them but they were grateful to be able to rescue many family photos.

Then I asked if she would like to show me some of the rescued pictures and she was delighted.

Each picture had a story and Georgia was happily animated as we went through several of them at each visit. Slowly, a picture emerged of a life well-lived with family and a generous spirit at the heart of everything.

As the weeks went by, I didn’t know if we would get to the end of the pictures as she became weaker and weaker but I saw her spirits steadily improve while the sadness receded.

Georgia died late one night and her husband called to tell me that her death was peaceful for both of them. He thanked me for my help but I felt I should be thanking him and Georgia for the lesson they taught me about the beauty and importance of memories accumulated over a lifetime and remembered with love.

Today,  life review and reminiscence therapy  can be found in many hospices and nursing homes.

“REMINISCENCE THERAPY” FOR PEOPLE WITH DEMENTIA

Last week the Wall Street Journal had an article titled “To Help Alzheimer’s Patients, a Care Center Re-creates the 1950s” about a California adult day care center for people with dementia.

This first of its kind center recreates a town square representing the time period from 1953 to 1961 when most of the patients were in the prime of their life.

The rationale is that dementia makes it hard for people to remember the recent past whereas older memories are preserved better for a longer time, “especially memories from childhood and early adulthood”, according to Professor Dorthe Bertsen who heads the Center on Autobiographical Memory Research in Denmark.

According to one small study done in Europe, most participants showed no improvement on cognitive tests but there seemed to be improvement in their mood and quality of life.

In one section of the article about trying reminiscence therapy at home, Mindy Baker, director of education at George G. Glenner Alzheimer’s Family Centers, suggests going through old photos, doing a favorite activity, and telling stories to trigger memories with the family member.

The goal is to facilitate memories rather than challenging inaccuracies  because a person with dementia might get upset if their memories don’t align with the facts.

CONCLUSION

But we don’t necessarily need a fancy facility like the 1950s-inspired day care center to help people with dementia.

Over the years, I have helped care for many patients, friends and family with dementia in their homes, in hospitals or nursing homes. I saw people who hadn’t spoken for a long time light up and join me in singing songs like “You are My Sunshine”.

For my friend Dr. Anne who had dementia, I would tell stories about her achievements and show her articles that she had written and she would grin the rest of our visit.

I learned these techniques when I cared for my mother when she developed terminal cancer and Alzheimer’s in the 1980s and I saw her memory slowly fading away.

Mom finally could not remember my name or my 2 year old daughter’s but she knew we were people she liked. We would all sit together and watch Sesame Street episodes or old movies holding hands and I saw how happy that made my mother even though she could no longer speak.

Most moving to me was that almost to the very end of her life, she was still trying to load the dishwasher and making the sign of the cross. Faith and family were the two things most important to her and this was her way of showing and remembering  this.

Memories are so important to all of us and especially at the end of our lives when they may be all we have left.

Personally, I’m saving up some good ones myself.

 

3 Tips for Safeguarding Your Loved One in a Nursing Home

I have had many relatives and friends who lived in nursing homes and, especially as a nurse, I am always saddened by how few of the other residents had any visitors, even family members. I have even heard relatives say they would just prefer to remember their relative “the way they were”.

This is not only tragic for the family member’s or friend’s psychological well-being but also potentially for their safety. Nursing home residents without visitors are at greater risk of neglect or even abuse. With sometimes inadequate staffing and/or high nurse and aide turnover, it is important that people in a nursing home have someone who knows them to look out for them.

Here are 3 tips that can help safeguard a friend or relative:

  1.  Get to know the staff and tell them about your friend or relative, especially likes or dislikes. Visit at different times or days in order to know the staff and when it is most convenient to talk with them.
  1. Notice “red flags” like poor personal hygiene, unexplained injuries, weight loss, emotional changes, environmental hazards etc. and know who to contact if you see a problem.
  1. Especially if you are have health care power of attorney for your relative or friend, ask about care conferences so that you can attend them. Such conferences usually cover how the resident is doing in terms of activity, possible pain, eating, mobility, etc. It is also crucial to know what medications have been ordered and given, especially the PRN (as needed) ones. For example, you may notice a change such as sleepiness or fatigue that can be helped with a medication change.

CONCLUSION

By 2020, it is projected that the global population of human beings who are 65 and older will surpass those under 5 for the first time in human history. At the same time, families have fewer children, older adults are more likely to have never married or to be divorced and adult children often live far from their parents. This makes it harder for many older people who prefer to live independently in their own homes indefinitely without help.

According to the CDC, 1.4 million people are nursing home residents in the US and, as I wrote in last week’s blog “‘Rational’ Suicide and the ‘Elderly'”, those residents really benefit from visitors as do all of us who volunteer to help the elderly!

 

 

“Rational” Suicide and the “Elderly”

An article in the May, 2018 issue of the Journal of the American Geriatrics Society titled “Rational Suicide in Elderly Adults: A Clinician’s Perspective”  by Meera Balasubramaniam, MD, MPH  recently appeared in both medical and nursing news sources.

Dr. Balasubramaniam begins with a case study of  “Mr. A” who at age 72 is considered a “baby boomer”, along with a whole section on the “baby boomer” generation-those born between 1946 and 1964 (ages 54-72).

Mr. A was a retired widower who had recently undergone successful cancer surgery and used a walker. He had no terminal illness but  he told a nurse that he always entertained the idea of ending his life “while I’m still doing well” and that if his health showed signs of failing or became too arduous, he would consider suicide. He stated “I’ve lived a good life. I’ll see how it goes, but it’s better to die well in my early 70s than have a life in which I have to be anxious before every doctor’s visit or have repeated surgery or end up in a nursing home.” (Emphasis added) A psychiatric consult showed no mental health problem.

Dr. Balasubramaniam says she wrote this article to “explore whether ethical arguments in favor of physician–assisted suicide apply to elderly adults who are tired of living but are not terminally ill”. (Emphasis added)

While claiming to not take a view on “whether suicide in non–terminally ill elderly adults can be rational”,  Dr. Balasubramaniam states that “It is important to consider the possibility that the combination of negative perceptions toward aging and dependency, greater social isolation, increasing access to drugs, greater need for autonomy, and an overall generational familiarity with suicide may be accounting for a higher proportion of older adults like Mr. A expressing the wish to end their lives on their own terms”. (Emphasis added)

DEATH AND THE BABY BOOMERS

It may seem incredible to even consider “tired of life” and older age as a “rational” reason for medically assisted suicide. However, Holland and Switzerland already allow it and the article itself cites the UK group “My Death My Decision” (formerly SOARS, The Society for Old Age Rational Suicide) that supports the idea that mentally competent older adults should have the right to assisted suicide rather than face an uncertain life that may be “fraught with frailty and dependence”.

As a Baby Boomer myself, we baby boomers were among the first teenagers exposed to a growing societal acceptance of new concepts like divorce , “free love” with the help of the birth control pill and legalized abortion, the “population bomb” predicting global cataclysm if people didn’t stop reproducing, the use of illegal drugs like marijuana and LSD for recreation, the rejection of religious principles and the slogan “don’t trust anyone over 30”.

So perhaps it should not be puzzling that people over 55 comprised the majority of people dying by physician-assisted suicide in the latest Oregon report since we saw so many of the traditional civil and moral moorings in society pulling loose when we were at an especially vulnerable age.

CONCLUSION

As one sage said, “Old age ain’t for sissies!” But, of course, this is not a “rational” excuse for legalizing assisted suicide for anyone-of any age.

Still, our older citizens are an especially high risk group for elder abuse, household accidents, money scams, social isolation, age-related medical bias and poor or even dangerous nursing home care.

Having friends, family and a meaningful purpose in life becomes harder when older people see their loved ones die or move far away and physical or mental limitations develop in themselves. Many older people fear losing their independence as well as being a “burden” on others.

Medically assisted suicide is not the answer but what else can we do to help?

We can start with our own family members, friends and neighbors. Like all of us, older people need to feel loved and appreciated. Look for ways to assist an older person that he or she might not have considered or be too embarrassed to ask about.

When I was a young wife and mother, our church parish started a Good Samaritan program to identify and help people with special needs of any age. It was a great success and our parish became more inclusive and accessible to everyone, especially the elderly. That was a benefit to all of us.

Other programs such as visiting one person for one hour each week in a local nursing home have helped some parishes to combat the sad reality I have seen that few people in nursing get  visitors, especially people with dementia.

Many of us naturally feel uncomfortable about going to nursing homes, but such places are usually thrilled to have volunteers and most have training programs.

Personally, my first volunteer activity was as a young teenager in a nursing home and it changed my perception of “old people” and life itself. I was amazed by the wisdom and stories the residents told as well as how much they appreciated anything I did. It was a great experience for a shy, gawky teen like myself.

Many years later, I took my young children to visit their grandmother in a nursing home after telling them what to expect in terms of sights, smells and sounds. Afterwards, my youngest daughter asked why everyone wanted to touch her leg while I held her. When I explained that the residents rarely saw a 2 year old and were so glad to see her, she grinned and said “OK!”.  She understood even at that young age.

In a society that seems to constantly celebrate youth and health, we need to make sure that our elderly also feel valued and supported.

And we might just save a life!

 

 

 

 

Don’t Write Off The Elderly

Late last year, my 95 year old friend I will call “Melissa” fell and fractured her hip which is especially serious at her age. In one study of people over 65 who fractured a hip, up to 50% died in 6 months with the highest mortality rates found in people over 90 years old.

In Melissa’s case, she also had long-term chronic congestive heart failure when she fell in her bathroom at home. She underwent successful surgery and was sent to a rehab facility where she developed a blood clot that went to her lungs. After successful treatment of that complication, she later developed a life-threatening pneumonia after returning to the rehab facility. She had difficulty breathing even with 100% oxygen by mask and 911 was called. I was with her when the ambulance arrived and I followed it to the hospital.

In the Emergency Room, the doctor asked her son and I about how aggressive to be if her heart or breathing worsened. I said “Ask her!” and the doctor was stunned when she vehemently said “Yes!”, even after he explained the potential problems with cardiopulmonary resuscitation and ventilators. My friend has a durable power of attorney naming her daughter as her health decision maker but the doctor wrongly assumed my friend was not able to speak for herself and that Melissa’s son and I were her decision makers. Thanks to our smartphones, Melissa’s daughter and I were in constant phone contact during that time.

After a few weeks in the hospital, Melissa astonished the doctors by recovering with antibiotics and a temporary BiPap (a face mask machine to support her breathing) until the antibiotics took hold. Then, after another short stint in a facility, my friend was finally able to go home with outpatient rehab and help from family and friends.

Going home was Melissa’s first goal.

This week, she accomplished the second of her goals: returning to Friday Mass and breakfast at Chick-Fil-A for her weekly outing with friends again. Her last goal is to celebrate at her 96th birthday party in August and none of us would bet against her achieving that also.

Elder Bias

In a society that seems to almost venerate youth and material success, those of us who are older can be made to feel useless and even a burden.

That can be fatal.

For example and just this month, 104 year old Australian scientist David Goodall who had no terminal illness traveled to Switzerland for physician-assisted suicide and to actively promote it.

According to USA Today, he said that:

My abilities and eyesight are declining, and I no longer want to live this way...I hope something positive will come out of my story and that other countries will adopt a more liberal view of assisted suicide.”

Sadly, he also added that he “had no pressure from his family to change his mind.” (Emphasis added)

David Goodall was a renowned biologist who produced more than 100 research papers and earned three doctorates when:

“In 2016, at 102, the university ordered him to leave his office, calling him a safety risk to himself. Goodall challenged the decision, which was reversed after an outpouring of public support.

Earlier this year, however, Goodall fell while at home alone in his one-bedroom apartment and remained on the floor for two days until he was found by his cleaner, according to The New Daily.

Afterward, Goodall said he was considered incapable of looking after himself. Moreover, most of his friends were dead.”

Philip Nitschke, director of Exit International, a right-to-die organization in Australia called Goodall’s “story of elective, rational suicide by the elderly is an important one.” (Emphasis added)

CONCLUSION

What a sad, depressing story Mr. Goodall’s story is compared to Melissa’s!

This should be a wake-up call to the rest of us not only about the frightening expansion and promotion of physician-assisted suicide but also about how all of us need to recognize the value, wisdom and even inspiration of older people.

We must also recognize that we all need help at some point in our lives. We are totally dependent on others when we are born and many of us need at least some help near the end of our lives. But when we truly care for each other, both the helper and the person being helped are enriched to live their best lives.

 

 

You Don’t Want to be a Burden, Do You?

An April 13, 2018 USA Today op-ed titled “Make an End-of-life plan or Lose your Money and Choices in your Dying Days” by Hattie Bryant begins with the statement “End-of-life care can bankrupt your family and rob you of choices. End the denial about dying. Make a plan in case you end up seriously ill and frail.” (Emphasis added)

Ms. Bryant is very upfront about using the economic argument about aging and the enormous toll it can take financially and personally on the family as well as medical costs. She states that “in 2011, Medicare spent $554 billion and 28%, or about $170 billion, on patients’ last six months of life. After $170 billion is spent, those patients are still dead.”

Her solution is a new kind of economic advance directive she developed (and is selling as a book titled “I’ll Have It My Way: Taking Control of End-of-Life Decisions“ ) “that deals with how you want your funds spent when you are seriously ill or frail.” (All emphasis added)

SHOULD WE HAVE A “DUTY TO DIE”?

Back in 1984, Governor Richard Lamm of Colorado found himself in the middle of a firestorm of outrage when, as the New York Times reported, “Governor Lamm Asserts Elderly, If Very Ill, Have a ‘Duty to Die”.

Here is an excerpt from the article:

Elderly people who are terminally ill have a ”duty to die and get out of the way” instead of trying to prolong their lives by artificial means, Gov. Richard D. Lamm of Colorado said Tuesday.

People who die without having life artificially extended are similar to ”leaves falling off a tree and forming humus for the other plants to grow up,” the Governor told a meeting of the Colorado Health Lawyers Association at St. Joseph’s Hospital.

”You’ve got a duty to die and get out of the way,” said the 48-year-old Governor. ”Let the other society, our kids, build a reasonable life.”

This philosophy was echoed in 2014 by one of the architects of Obamacare, Dr. Ezekiel J. Emanuel, when he wrote “Why I Hope to Die at 75-An argument that society and families—and you—will be better off if nature takes its course swiftly and promptly” for The Atlantic Magazine.

At age 57 at the time, Dr. Emanuel states that while death is a loss, there “is a simple truth that many of us seem to resist: living too long is also a loss” that “renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.” (Emphasis added)

He states that he will stop trying to prolong his own life by age 75.

CONCLUSION

Helping to care for many terminally ill or seriously disabled relatives, friends and patients of all ages for many decades both professionally and personally, I have a different perspective.

We are all born dependent on others for care and many of us need at least some help from others at the end of our lives. This can be hard at times-as even parents of newborns will attest-but the rewards are great both for the helper and the person being helped.

I remember when my mother with Alzheimer’s and terminal thyroid cancer was dying in 1988. It wasn’t the most convenient time for us, to say the least. I was a suddenly single parent with three young children and financially struggling.  My mother no longer recognized me but, as I told a friend, the most important issue was that I recognized her.  As a family, we did what was medically reasonable for my mother to help her without either prolonging or hastening her dying.

Taking care of my mother was a wonderful, if occasionally difficult, experience and I am grateful that we were able to keep her at home almost to the very end.

The final result was that my mother was kept  safe, comfortable and loved. Her funeral was truly a celebration of her life and my children learned an important lesson about the circle of life and taking care of each other. We still talk fondly about their time helping with grandma, even after 30 years.

When I made out my own advance directive, I made sure that it was as protective as possible against a hastened death. I don’t fear death. I do fear the bioethicists  and others who use economics and fear to push especially older people into prematurely signing away their rights to even basic care and what this does to our society.

When Children Die, Where is God?

This week, I was called to see a beautiful 2 month old baby boy I will call “Joseph” who was brought by his grandmother, mother and father to one of my city’s children’s hospitals from a small town hours away.

Joseph was born with a rare genetic condition called Trisomy 13 and needed medical care for a problem. As a nurse who has been active in medical issues involving people with disabilities since having my daughter Karen who had Down Syndrome, I was asked to help the parents oversee Joseph’s care.

Baby Joseph was doing well until an unexpected problem developed and despite heroic efforts to save him, he died early Friday morning. It was so heartbreaking for his family and the rest of us but their love for Joseph was inspiring and they said they were blessed to have had him.

So instead of my usual blog, I would like to reprint an article I was asked to write for Voices magazine in 2012 in honor of baby Joseph and his wonderful family.

When Children Die, Where is God?

On October 18, 2012, we lost our 6-year-old grandson Noah after a long and often brutal battle with a rare autoimmune disease called familial HLH (Hemophagocytic lymphohistiocytosis). Less than two months later, on December 14, 2012, twenty children around our Noah’s age — along with other victims — were viciously gunned down at Sandy Hook Elementary School by a disturbed young gunman. While the Sandy Hook tragedy affected the whole country and Noah’s death affected a smaller group of family and friends, I kept hearing the same question: Where is God or does He even exist?

The answer is that God is where He always has been when we grieve and suffer: with us and even carrying us through the roughest times, as the famous “Footprints in the Sand” poem depicts.  But what does that really mean?

Almost forty four years ago, I witnessed my first death of a child as a student nurse. Thirty years ago, my baby daughter Karen who had Down Syndrome died from complications of pneumonia. Three years ago, my oldest daughter Marie died by suicide. And now, there are Noah and the Sandy Hook victims. Personally and professionally as a nurse, I have also been with countless parents and others who have lost loved ones. I would like to share what I discovered as my personal “survival guide” for coping with grief as a Catholic woman. It consists of three decisions I made years ago.

I Choose to Live

All death is hard because it involves loss, but the death of a child seems especially cruel no matter whether the death resulted from violence, accident, or illness. No parent expects to outlive their child. When the supposed “natural order” of life and death is breached, it shakes all of us to the core even when the child is not our own. Especially in today’s secular world, even people of faith can feel lost and helpless.

When a child dies, shock, denial, and even alcohol and drugs can cushion the crushing grief for a while but eventually reality sets in. It is hard to even consider facing years and years of living without that precious person. Life is totally disrupted and even the routine of being at a hospital or bedside feels like a loss. In my case when I lost my daughters, I had to remind myself that my husband, children, and others needed me, but at times even that thought seemed totally overwhelming rather than motivating.

Recently Cesar Millan, the famous “dog whisperer” talked about his suicide attempt after a number of losses and how he learned to cope with bereavement from his experience with dogs. When dogs grieve, he recommends three things: exercise, discipline, and affection. He said he found this also helped him.

Looking back, I found that these three techniques had helped me. Exercise decreased my anxiety and pain. Discipline meant appreciating even the most mundane routines of life or work and embracing the distraction. Hugging my loved ones and friends gave me a renewed sense of connection with the world and even with God.

However, I know that life will still contain many challenges. For example, while Noah’s 2 1/2-year-old brother Eli is free of HLH, we recently discovered that Noah’s unborn baby brother Liam, who is due in April, does have the disease and will also need a bone marrow transplant. We pray that he will achieve the cure that eluded Noah but we face the future with our confidence in God intact. I will never be a cockeyed optimist but I do know that storms can be weathered and that we can be better rather than bitter as a result. (2017: Liam is now a happy, healthy 4 year old,)

I Choose to Be Happy

This is perhaps the hardest decision that I or any other bereaved parent has made but it is crucial. Years ago I was with a young mother who tragically lost her 2-year-old son. We spoke almost daily for a long time. Finally, she told me that she couldn’t see ever getting past her grief. I asked her if she had laughed yet. Embarrassed, she said she was watching a TV comedy show the night before and realized that she thought she heard a sound resembling a laugh come out of her. I told her that any laughter was the beginning of healing. I reassured her that she would laugh again and have moments of pleasure more and more in the future and that she should celebrate those moments rather than feel guilty. Life may never be “normal” in the old sense but life still had the potential to be good, perhaps even great.

From other bereaved parents who helped me, I learned that you don’t have to hold onto the grief to hold onto the love you feel for your child. That beloved child would not want your life to be blighted by his or her death any more than you would want your children to be forever sad after your death. And, in our rich Catholic tradition, we honor Jesus’ mother Mary as Our Mother of Perpetual Help, not Our Mother of Perpetual Mourning.

I now look at working toward happiness and fostering a generally cheerful outlook as a tribute to my daughters and grandson. This doesn’t mean that I am immune from being blindsided by grief and longing when I accidentally hear certain songs, see another person their age, witness another death, etc. Like probably everyone else I still have what my husband kindly refers to as my “moments” when life seems like a long, hard slog. But I continuously strive to foster an attitude of gratitude for what — and especially who — I have left. I don’t want the children’s legacy to be one where their deaths destroyed a family.

There is no set timeline for grief and bereaved parents and other relatives need to be patient with themselves and those around them. I remember the old days in medicine when grieving relatives were immediately offered a tranquilizer. I knew even then that this often just delayed the process instead of helped. There is no “good” or “bad” way of grieving. Everyone has their unique journey although it is not a sign of weakness to ask for or offer professional help when necessary.

I was surprised by the depth of grief I felt for the Sandy Hook victims and their relatives. I found it excruciating to watch the relentless TV coverage of the tragedy but I also found it hard to turn away. However, in watching the story unfold, I was struck by the fact that although I have spoken with many other bereaved parents over the last three decades, I never met a parent who said they wished their beloved child had never been born rather than to have faced the grief the parent endured. Obviously, you can never lose when you truly love and I was so glad that the Sandy Hook parents were surrounded by loving, supportive people in their community and countless other caring people throughout the country who wanted to help.

Pain is an inescapable part of the grief journey, but we may hope that we all can eventually get to the point where it is the life, not the death, of our beloved child that is the most important to us.

I Choose Not to Reject God

I’ll never forget reading about a famous and outwardly successful man who said he gave up on the idea of God when his little sister died. This gentleman wound up with a series of failed marriages and despite his millions of dollars, is bitter and unhappy.

There is no question that faith is often challenged when tragedies like the death of a child happen. But rejecting God means rejecting the greatest source of love and healing that we so desperately need at our worst times.

I eventually realized that I never did and never will have total control over my or anyone else’s life and that this is tolerable because God has a Divine Plan. I’ll never forget the wonderful Visitation nuns who taught us that life is like a tapestry that is large, beautiful, and intricate. However, on this earth we see the tapestry only from the back. We see dark colors, chaos, and loose threads that seem to go nowhere. Nothing in the tapestry appears to make sense, much less beauty. It is only when we die that God turns the tapestry around and we can finally see the amazing result. God doesn’t cause tragedies but rather brings good out of the evil we see.

It was when my Karen was born that I discovered that God is communicating with us all the time. It was then that I started noticing what I call the “miracles of grace” that God seems to send at some of our most heart-searing times. Over the years there have been some great ones: The depressed friend intent on suicide who was saved at the last moment by a smile from Karen. The young person who came back to the Church when Marie died. The many people who have volunteered to become bone marrow donors in honor of Noah and to help others like his little brother Liam.

The big miracles of grace also taught me to look for and appreciate the smaller mercies that comforted me and let me know that God is there: The woman who told me that baby Karen had done more good in her short life than most 80 year-olds. Visits from Marie’s friends who told me wonderful stories about her that I never knew before. Great friends who seemed to call at exactly the right moment when Noah was so sick.

When I was a little girl, I was often irritated by my mother’s admonitions to “offer it up for the poor souls in Purgatory” when I was hurting either physically or emotionally. It took years for me to understand that offering up my pain for such souls or any other good intention for others often acted as a kind of pain reliever and, at the same time, made my pain meaningful in a good way. I also learned that even little acts of kindness performed in memory of a loved one were a great form of honor and gratitude for those lives that are still joined to us in God’s community of love.

Today, I would ask those of you who read this to consider offering up a frustrating situation or performing some small act of kindness in honor of Noah, Karen, Marie, and the Sandy Hook victims.

Those children are now in God’s Hands. The world is still in ours and we can make it better.

Do Pro-Lifers Really Believe That “Life Begins at Conception and Ends at Birth”?

meeting Kaylee

One of the most frequently repeated myths in the abortion debate is that pro-lifers really don’t care about life. Some abortion supporters even maintain that pro-lifers believe “life begins at conception and ends at birth”   and do nothing for women and babies after birth.

The picture above is of me holding my newest granddaughter Kaylee Marie for the first time on May 17, 2017. Of course, we think she is gorgeous and are thrilled that she is a healthy 7 lb. 8 oz.

Some babies are not born so fortunate. Kaylee’s late Aunt Karen was born in 1982 with a severe heart defect as well as Down Syndrome and faced medical discrimination regarding heart surgery. The ones who stepped up to help were not the so-called “pro-choice” people but rather people who were pro-life.

It was after Karen that I actively joined the pro-life movement and learned that pro-lifers not only helped women and babies in crisis pregnancies but were also active in helping people of all ages and conditions as an antidote to the culture of death.

These wonderful people inspired me to get into personally helping families caring for babies with disabilities, working with people who had severe brain injuries and volunteering with people who had terminal illnesses, dementia or suicidal ideation.

And now, of course, I am also helping my daughter and her husband to get some sleep and adjust to the awesome responsibility and joy of their first child, baby Kaylee.

CONCLUSION

Kaylee’s mom was my next child after Karen. Foregoing medically unnecessary prenatal testing, I happily carried my daughter Joy with the certain knowledge that every child is truly a gift from God and that you can never lose when you love.

Abortion of any baby is ultimately a failure of  that love and reality. We in the pro-life movement are committed to promoting the best for all babies-even the planned and dearly wanted ones like Kaylee Marie-as well as their moms.

This is because pro-life is really an attitude of caring and helping, not political ideology.