HEALTH SENSE: Health-care directives necessary in a COVID world

No adult is ‘too young’ for a health care directive in this COVID world

By Jo A. Kuchle

There have been memes, TikToks, social media postings and news stories about the strangeness of 2020. Many are wishing and hoping that the year ends soon and without further calamity. The source of most of these postings is the coronavirus and its grim statistics. It has impacted many – including leaders – so thinking it could infect any one of us is certainly not beyond question.

What would happen to us if the coronavirus – or any disease, for that matter – inflicted us that we could not make our own decisions regarding health care? A past national news story can help explain what could happen to us in this pandemic.

In 2005, the national news media accounts of the Terri Schiavo became a hot topic around kitchen tables all over the country. Ms. Schiavo was the Florida woman at the center of a battle that pitted her husband against her parents regarding whether she should receive food and water by artificial means because she was in a persistent vegetative state. Everyone had an opinion either “for” the husband or “for” her parents.

The key issue was this: What did Terri Schiavo want? Her husband said she did not want extraordinary measures, including food and water, and her parents said she did. No one knew for sure, but it seemed that everyone had an opinion. Her case was one of the most gut-wrenching cases of our time because it brings up an issue all of us could face. We find ourselves asking, “What if that were me?”

Terri Schiavo generated a host of legal cases. The Florida Supreme Court heard several appeals. Congress got involved, as did the then-President George W. Bush. The U.S. Supreme Court denied a petition for certiorari and, as a result, eventually the feeding and hydration tube was removed and Ms. Schiavo died on March 31, 2005. While the opinions are many, there is one thing that everyone in the case agreed upon, and that is that there would be no case at all if Ms. Schiavo had completed a directive, “living will” or durable power of attorney setting forth her wishes.

Since Jan. 1, 2005, Alaska has had the advance heath care directive. The directive is a written document that sets forth what a person wants to happen to them in the event of their incapacity. Every state has some version of a directive or a living will. A durable power of attorney appoints a person to take care of your personal affairs in the events you cannot. It is “durable,” meaning that it is still effective should you become incapacitated.

In a coronavirus world, it makes sense to have a health care directive – particularly if you have strong beliefs about ventilators and alternative therapies. The new directive is quite comprehensive, and it is worth taking a look at. It is also a good idea to discuss these issues with your doctor and to make sure he/ she also has a copy of your directive.

Alaska’s directive can be completed, and an attorney does not need to draft the form. The directive sets forth basic medical choices, including whether the person wants food and hydration, as well as pain medication. The directive does not grant or determine financial powers. Most hospitals require a directive be on file before admission. The directive also names a person to make medical decisions on behalf of the incapacitated person. In Alaska, the directive needs to be witnessed by two disinterested people or signed before a notary. It is best to do both.

The directive becomes effective when the principal (the person who signed the health care directive) lacks capacity and that decision is made by a primary physician. The power granted in the directive form can be made effective upon signature, but it remains in force if the principal lacks capacity, which is different than a standard power of attorney, which is revoked unless it is made “durable.” Being “durable” simply means that the validity of the document survives the principal’s incapacity.

A directive can be revoked in any way that shows intent to revoke such as tearing, burning or writing “revoked.” Total destruction is the best way to revoke so that there is no question of what the principal wanted. The agent designation must be in writing or the principal must orally inform the supervising health care provider of his/her designated agent. It is always best for this to be in writing. Divorce, dissolution or legal separation revokes a spousal agency.

If there is no directive, an adult may designate a surrogate by informing the health care provider, orally, who they want to serve. If that is not done, then the statute sets forth the priority of who can act — a spouse, adult child, parent, or adult sibling. If there is no one else, someone else who cared for the person may act. Obviously, there could be issues if there is more than one adult child, parent or sibling and,

of course, those people could disagree on what should be done.

Moving down the list of priority, it is likely that at some point a medical provider will want the designated person to have court authority, most likely in the form or a guardianship, so that the medical provider knows that he/she is dealing with a person who has authority to act. The cost – both emotional and financial – can be avoided by a directive. A directive only becomes important when the principal is in a medical crisis and at that time, the last place family and friends want to be is in court.

Anyone over the age of 18 should make a health care directive. Terri Schiavo was in her mid 20s when she had the health care crisis that led to her incapacity. In this pandemic, the coronavirus has impacted the young and old. Any competent adult can complete the form and should complete the form so that his/her wishes are in writing.

In order to cover all of your needs in the event of incapacity, it is also a good idea to have appointed a trusted person as your attorney-in-fact in a written power of attorney so that he or she can take care of your financial and personal affairs during the period you cannot. The power of attorney can be made “durable” so that it is still effective should you become incapacitated.

A copy of the statutory Alaska advance health care directive is available to be downloaded at www.alaskalaw.com. Go to “articles” and look for this article, and then click on the link in the article to look at the form. It is advisable that you discuss this form, which is straight out of the statute, with your own

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attorney to make sure it fits your personal situation and that you complete it correctly.

No one over the age of 18 is “too young” for an advance health care directive, and amid a pandemic, it is never too late to get a directive completed. Save yourself and your family heartache, headache and money. Get an advance health care directive so that your loved ones know what you want to happen should you face a debilitating illness. No American family should have to face the heartbreak that the Schiavo family faced nor that many have faced as a result of the global 2020 pandemic.

Jo Kuchle is a shareholder at CSG Attorneys in Fairbanks. She has practiced in estate planning and probate for 33 years.

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Chasing a snowball

Cantwell woman’s health woes kept growing, but it took years to get a diagnosis By Kris Capps much as she could about her symptoms between the ages of 20 and 50. Women AlAskA Pulse so she could be a full partner in her account for more than 70% of the cases,

Fhealth care. The more she researched, according to UCLA Health. ear and anger can easily take the more knowledgeable and selfover when you know you are confident she became. She started ask- What is Cushing’s disease? sick and doctors just can’t seem ing more questions of doctors and soon Cushing’s disease is an excess of the to pinpoint the problem. Kaeleen Mayo became a more active participant in steroid hormone cortisol in the blood of Cantwell knows exactly how that decisions about her treatment. level caused by a pituitary tumor secretfeels. It took years, but eventually doctors ing adrenocorticotropic hormone

For years, the 41-year-old woman confirmed what she said she had dis- (ACTH). ACTH is a hormone proknew something was seriously wrong. covered on her own. She suffers from duced by the normal pituitary gland. She just couldn’t get the right diagnosis. Cushing’s disease. Symptoms include fullness and She repeatedly entered medical facilities This is a rare and serious condition, rounding of the face (called moon-face); full of hope and repeatedly left dejected. affecting 10 million to 15 million people added fat on the back of the neck; easy

Eventually, she decided to learn as every year, most commonly adults bruising of the skin; excessive weight

Kaeleen Mayo with her daughter Hailee in 2016, just before her Cushing’s disease symptoms became severe. Photo courtesy

Kaeleen Mayo.

“My Cushing’s is like a snowball rolling down a hill. It gets bigger and bigger and along the way picks up pieces of debris.

My problem started out small and throughout the years it has gotten bigger and bigger.”

— Excerpt from Kaeleen Mayo’s diary

gain especially in the abdominal area while legs and arms remain thin; weakness and fatigue; wasting away of muscles; high blood pressure; vision loss and more.

Kaeleen found doctors often treated her for individual symptoms, like high blood pressure or being overweight, but for a long time didn’t pull all of the symptoms together for a full picture.

“You feel like you’re this nag,” she said. “In reality you just want to be validated for all the issues that you have. You want a diagnosis so you can get better.”

She was diagnosed with thyroid cancer in 2013 and underwent treatment. Shortly after that, symptoms of Cushing’s disease kicked in.

“In 2014, I started going downhill,” she said.

She developed acne, one of the symptoms of Cushing’s.

“I’m 41,” she said. “I shouldn’t be having acne.”

Vision started failing in one eye. During an MRI, specialists found a tumor on her pituitary gland but told her tests showed the tumor was not producing the harmful hormone.

Years later, it was discovered that she just happened to present differently, meaning her symptoms were not textbook symptoms.

In December 2019, a doctor finally confirmed Cushing’s disease as her affliction — just as she had determined herself many years earlier.

Surgery was scheduled for 2020 to remove the tumor and she was optimistic to be on the road to recovery. Unfortunately, surgeons had to abort midstream when her lung collapsed in the operating room. She needs to reschedule the procedure.

“Now I’m petrified to have surgery,” she said. “But I have to, for my future. I have to get this tumor out and get Cushing’s under control.”

“I want to be better to do things physically more and not feel so sick all the time,” she added. “I want to do things

Kaeleen Mayo before the effects of Cushing’s disease were evident.

“They assumed that all my problems were from being overweight. But my weight gain is a symptom of Cushing’s. ‘Snowball effect.’

After years and years of hearing that and feeling those feelings you start to believe it. You start to really feel bad about yourself. You wonder why you can’t lose weight, why you can’t feel better? It’s all my fault, I am a weak person. You feel like everyone else feels and perceives you that way. Which a lot of them do.”

— Excerpt from Kaeleen Mayo’s diary

“Even after being diagnosed with Cushing’s I still doubt things and I still blame myself even though I have a clinical reason for all of my problems and my appearance. I would say Cushing’s has affected me mentally and emotionally in a way that has been debilitating and life changing. “

“Nothing makes me more happy than when people want to learn about this disease and ask how it has affected me, my family and my life. It has been all-consuming and debilitating for so many years. Now that I finally have a diagnosis I feel somewhat free. I want everyone to know about Cushing’s, learn about it and hopefully perceive and be more compassionate with overweight people because you never know what is causing their issues.”

with my family.”

Looking ahead

The years of suffering with these symptoms have taken a toll.

As her symptoms grew worse, her personal life suffered.

“My body has manifested into a Cushing’s body, and it’s not pleasant,” she said. “When people see me, they automatically pass judgment. They think that I am lazy and fat, and why doesn’t she just lose weight, etc. I know people think that and I can tell. “

Consequently, she doesn’t like to go out in public anymore.

“I’m not going to fully blame Cushing’s disease for all my issues, but it is a huge reason for a lot of issues,” she

Kaeleen Mayo outside her home in Cantwell this fall.

Kris Capps photo

added. “My whole prime of life has been this sickness. It’s upsetting.”

One thing she has learned is to never give up.

“I’m not a doctor,” she said. “But I do know my body and there was so much more to this.”

She is relieved to finally have a diagnosis. The struggle has turned now to effectively dealing with the disease.

For her, part of healing involves sharing her story with others and educating them about Cushing’s disease. She doesn’t want anyone to go through the challenges she has faced.

“If I can just help one person, or two, to spread the word, I would be happy,” she said.

She still has other health issues not related to Cushing’s disease. But first things first. She wants to get Cushing’s under control and then chip away at those other medical problems.

“I’m going to ride the storm here and see where it takes me,” she said.

Her advice to others who may find themselves in a similar situation: Find a support group. Check all your hormone levels, because you could be a patient without textbook symptoms.

“Don’t feel bad to ask your doctor for tests,” she said. “They don’t know your body like you know your body.”

“Knowledge is power,” she added. “Take control of your own health.”

Contact staff writer Kris Capps at kcapps@ AlaskaPulse.com

Chuck Gray has lived most of his life in Alaska and was a pilot until just two years ago. He was diagnosed with multiple sclerosis and says he believes many people in the north develop MS because of a lack of vitamin D.

Studies: Life in the far north may bring increased risk of MS

By Chuck Gray

Ihave had multiple sclerosis since diagnosed at age 52 in 1980. I am now 90 years old and have lived in Fairbanks since I was 15, beginning in 1943. I was born in Illinois.

If I had known then what I know now, I do not believe I would have MS. It is now well established that low vitamin D is a major trigger for the disease. Factors for low vitamin D are how far north you live (environmental), family history (genetic) and diet. It has been known for a long time that people born and raised near the equator rarely have MS. The farther north you live, the better your chance of getting MS. A doctor in Fairbanks once told me there is “a lot” of MS in our community. Two friends of mine, one male and one female, have it. I believe most longtime residents of Fairbanks have low vitamin D levels unless they are on a supplement. So let’s consider what I have learned about the disease, such as taking a vitamin D supplement, and other interesting factors.

MS is an autoimmune disease where the myelin insulation on the nerves is broken or destroyed and consequently the nerve connection between brain and muscles is lost. Current studies are geared to finding the cause of this destruction and possible repair. But for the most part, when a function is lost, it is permanent.

Modifying drugs have been quick to come on the market in the last 20 years. There are about 20 now approved or in the pipeline. Most are injections; two are oral. None cure the disease but render attacks less severe or lengthen the time between attacks. The MS Society of America is now supporting studies to see if vitamin D can be effective once MS as been diagnosed, in both types of MS. No MS drugs were available when I was diagnosed, and I have never taken any.

Doctors now identify four types of MS, but they boil down to two basic types: relapsing-remitting and progressive. In the first type, you have an attack, maybe minor at first, then it goes away — maybe for years — but leaves you scarred (mine left for seven years). But it will appear again. This is why it is so difficult to determine if a diet or a new medicine is helpful. The second type, progressive, is usually more devastating because there are no remissions between attacks. And the first type can morph into the second. Most often the first attack happens between the ages 20 to 50. I was 52. My first diagnosis was somewhat subjective because MRI scans were not available then. MS is associated with plaque spots in the brain or brain stem that show on an MRI scan.

My own progress was slower than some. Between 1959 and 1980 I can account for three or four definite events, each leaving my left side weaker. In 1999, at age 71, the MS specialist at Scripps Clinic in California reviewed my case and as an aside mentioned that he sees less MS activity in patients after age 70. It was about then that I heard of studies in England about vitamin D and began taking it. I have not had any definite attacks since; mostly just old age setting in. I retired from the Daily News-Miner in 1993 at age 65 and found the same year I did not have the stamina to hunt Dall sheep any longer. I flew an airplane until two years ago (with extra FAA medical surveillance). Life is still good.

Vitamin D is actually a hormone. It naturally occurs when sunlight strikes your skin. Vitamin D regulates a lot of things in your body. Almost everyone knows that, along with calcium, it builds strong bones. It is also good for your heart and may be important in preventing some kinds of cancers, according to the National Institutes of Health. But back to MS: There is a blood test for the amount of vitamin D in your system, called the 25-hydroxy test.

Let’s look at some of the interesting facts that various studies have come up with. Remember I said that the farther north you go, the more MS? One study noted that Norway was an exception to this. The authors surmised that since Norway is a rather narrow country with a long coastline, the residents have access to and consequently eat a lot of fish (vitamin D).

Or this one: A pair of Canadian researchers charted birthdates of 40,000 people with MS in Canada and other northern countries. Their graph showed it peaked in May as the worst month to be born in and a low point in November as the best month. The conclusion was that mothers who carried babies during winter months had lower vitamin D levels than those who were born after a summer of sunlight. Apparently mothers impart some permanent immunity to the baby. (I was born in May). Incidentally, women have about two times more MS than men. Presumably, men spent more time outdoors. All of this is to say that, if you live in the north country, it is wise to have your vitamin D checked with a blood test. A supplement may be prescribed if it’s too low. I wish I had known this when I was 20 or 30 years old. The vitamin D test is expensive and is probably why so few people have it done. Testing runs about $250 at a doctor’s office but as low as $25 to $40 at a Health Fair.

I submit my story because I believe it is now possible to substantially reduce new cases of multiple sclerosis in Fairbanks and the north country if people will monitor and control their vitamin D levels.

Chuck Gray has no medical training. His opinions are his only, based on his many years living with MS, consulting with doctors. His email address is cgray.ak@gmail.com.