Five Things my Mother (and Daughter) Taught Me about Caring for People with Dementia

My mother developed Alzheimer’s disease, the most common type of dementia, in her early 60s. Later on, she was diagnosed with an aggressive thyroid cancer that required a surgical opening in her throat called a tracheostomy so that she would not suffocate from the tumor. My father and siblings were naturally distraught and overwhelmed.

I was 38 years old at the time and a suddenly single mother with 3 young children. My youngest daughter Joy was 2 years old and in diapers. My family looked to me for help.

As a nurse, I thought I knew the challenges of caring for someone with Alzheimer’s as well as someone with cancer and I was glad to use that knowledge to care for my mother. But, especially at first, it wasn’t easy.

Mom would ask the same questions over and over, have episodes of hostility and paranoia and periodic insomnia. She also became adept at thwarting the safety measures we used to protect her.

Then, one day near the end of my mother’s life, I sat on a sofa holding hands with both Joy, now over 3 years old, and my mom watching Sesame Street on TV. I was struck by the fact that both of them had the exact same expression of happiness on their faces. It was then that I realized how far we all had come and how much I had learned.

FIVE THINGS MY MOTHER AND MY DAUGHTER TAUGHT ME ABOUT:

1. Getting things done

I soon realized that both my 2 year old daughter and my mother responded best to one direction at a time and the patience to wait until one action was completed before directing another action.

For example, instead of just saying “brush your teeth” and trying to hurry the action along, directing both of them on just one step at a time time ultimately saved both time and frustration on everyone’s part.

I also found that set routines were comforting to both my mother and daughter despite their obvious differences.

2. Answering questions

Like most people caring for a relative with dementia, I found that answering the same question from my mother over and over again was exhausting. Answering different but incessant questions from my daughter was also difficult at times. So I learned the technique of distraction. For example with my mother, I would interest her in another activity such as folding laundry with me. With my daughter, I would often ask her to “read” a book to me. Judiciously used, this kind of pivot would relieve the increasing tension and make both of them happy.

3. Attitude

I made sure to smile often and establish eye contact with both my mother and my daughter. I would work my name into the conversation when I could see my mom trying to remember who I was and I made sure to often say “I love you” and praise the efforts of both my mother and my daughter. I made sure each had my full attention at that time even when I was in a hurry myself.

4. De-escalation

I found that both people with Alzheimer’s and 2 year olds are prone to sudden meltdowns that are difficult to handle. I discovered that watching for increasing agitation, frustration or the need for a nap and taking preemptive measures could often calm the situation before tempers flared out of control.

5. Music

I always found it fascinating that people with late-stage Alzheimer’s, even those who were rarely verbal, would often start singing when they heard a song they knew. The same is true with young children who naturally delight in songs. Our sing-a-longs were great fun for both my mother and my daughter. “You Are My Sunshine” was a special favorite. My daughter Joy is now an adult and a music teacher.

Best of all, my children still have fond memories of their grandmother after almost 30 years.

A FINAL STORY

This year, some married friends of ours buried the wife’s beloved mother who had Alzheimer’s. They and the rest of the family had worked together to take wonderful care of the mother at home as long as possible and in the nursing home where she finally died.

As the mother’s Alzheimer’s progressed to a later stage, she started to have vivid hallucinations.

One day, the couple made plans to take the mother to her favorite restaurant but she refused to go without the “two little girls over there.” The wife started to tell her mother that she was having hallucinations but her husband gently stopped her. Instead, he told the mother that the little girls weren’t hungry. The mother smiled and immediately got up to go to the restaurant.

The wife later asked me if it was OK to “lie” to her mother. I told her that her mom would probably have been embarrassed and upset to hear that she was having a hallucination. She might have even argued about it.

On the other hand, her husband’s response was both kind and respectful of her mother’s dignity. And, technically, those “two little girls” could not be hungry because they were not real.

To me, that kind of loving attitude from both these friends is inspirational. I wish that it was universal.

CBS’s “60 Minutes” and the Selling of Physician-assisted Suicide

In the March 13, 2016 TV “60 Minutes” segment titled “Aid in Dying” (retitled “Should the terminally ill control how they die?” in the online transcript, the vaunted investigative news show crossed the line from presenting facts to enthusiastic advocacy.

The stage was set when medical correspondent Dr. John LaPook, an internist and son-in-law of liberal activist Norman Lear, opened the segment by stating:

This is not euthanasia, when a doctor gives a patient a lethal injection. That’s illegal in all 50 states. Aid-in-dying, or what opponents call “assisted suicide” and supporters call “death with dignity,” relies on people taking the medication themselves. Oregon became the first state to legalize it 18 years ago, but because a nurse or doctor is rarely present, it’s remained mostly a private affair, practiced behind closed doors. We wanted to hear from patients and family members who’ve experienced it and are fighting to make it legal nationwide. (Emphasis added.)

If you go to the link for the transcript, you will also see “related videos” with segment extras not included on the TV show.

One titled “ethical concerns” is an interview with Dr. Katrina Hedberg, state epidemiologist of the Oregon Public Health Division, to discuss “ethical concerns raised by her state sanctioning aid-in-dying”. Not surprisingly, Dr. Hedberg strenuously denies that assisted suicide is a danger for the “disenfranchised” or for medical economic or family burden reasons. Instead, she says “the opposite has happened” despite cases like Barbara Wagner’s.

In the segment extra “How does the medicine work?”, the assisted suicide doctor explains that the medicine simply just “shuts off the brain” starting “at the top” where consciousness is and then goes to “the bottom” of the brain where heartbeat and breathing occur. Not a very accurate or scientific explanation but designed to reassure the public.

In the televised segment, there was only a very short interview with Dr. William Toffler, National Director of Physicians for Compassionate Care  but only identified by Dr. LaPook as a doctor “who’s taken care of terminally ill patients for 40 years” and whose wife died of cancer in comfort and without physician-assisted suicide. Dr. Toffler’s practical and ethical concerns were ignored or dismissed by Dr. LaPook.

The rest of the segment involved interviews with people fighting for physician-assisted suicide for themselves or a relative and an assisted suicide doctor. The usual lethal overdose drug and the method for using it for suicide were described in detail.

A major portion of the segment were interviews with Brittany Maynard’s husband and Dr. Eric Walsh, the Oregon physician who prescribed the overdose for the 29 year old woman with a gliobastoma brain tumor whose countdown to assisted suicide became a media sensation in October, 2014.  Brittany’s suicide was described by her husband as Brittany just going to sleep and slowly stopping to breathe.  Not surprisingly, it was after Brittany’s suicide that most mainstream media then changed the usual term “physician-assisted suicide” to softer terms like “aid in dying” or “physician-assisted death”.

Ironically, 60 Minutes aired a segment on March 29, 2015-just 5 months after Brittany Maynard took her lethal overdose-titled “Killing Cancer  The segment followed patients in a year long clinical trial who had gliobastoma brain cancers like Brittany’s. Many of these patients saw their cancers disappear after being treated with a reengineered polio virus. This was touted as a great breakthrough by “60 Minutes” but went unmentioned in this segment.

Another interview was with a man in hospice who was being seen by Dr. Walsh but, as the segment stated:

Though usually extremely effective at keeping people comfortable, in rare instances, standard hospice care doesn’t work well enough. In those cases, Dr. Walsh says, one option is something called palliative sedation.

Dr. Eric Walsh: When the physician decides that suffering is intolerable, the physician prescribes a medication which puts the patient in a coma…The nurse administers it. It’s given until the person is asleep. The person sleeps for three days, five days. I’ve had someone live 10 days, still excreting, still breathing, with the family at the bedside wondering, “When is this going to end?”

When an assisted suicide doctor himself “decides that suffering is intolerable”, prescribes a intravenous continuous medication to be administered by a nurse to speed a patient’s death, how is that NOT euthanasia?

Sadly, the last interview with a woman dying of colon cancer illustrates the dangers of assisted suicide for so-called “altruistic” reasons that would also appeal to many non-terminally ill but debilitated or suicidal people:

Dr. Jon LaPook: And it sounds like from what you’re saying your decision to
perhaps take the medication will be a final act—
Elizabeth Wallner: Absolutely.
Dr. Jon LaPook: –of protecting your son.
Elizabeth Wallner: Absolutely. I just want him to remember me laughing and, you know, giving him a hard time, and telling him to brush his teeth, and knowing that I would– I would, you know, walk across the sun for him. (Emphasis added)

The public deserves a better and more comprehensive discussion about physician-assisted suicide. Such discussions have been occurring in state legislatures where physician-assisted suicide groups like Compassion and Choices relentlessly push for legalization and medical, disability, pro-life and other groups testify to the real facts and dangers.

There must be something to this opposition since so far this year 8 states have rejected physician-assisted suicide bills.

 

Miracle Baby Comes Home for Christmas

Francesca and Lee Moore-Williams held their beautiful 18 month old daughter Bella’s hand as her ventilator was turned off and they waited for her death. But just 30 minutes later, Bella awoke  “kicking and screaming” according to the UK’s Mirror newspaper article “Miracle baby whose life support was turned off home for Christmas”. Five months later, she is scheduled to come home this Christmas.

Bella’s health became a concern in April when clumps of her hair fell out. Three months later, she took a turn for the worse and was admitted to a hospital in critical condition. Doctors told the parents that a MRI scan showed abnormalities on both sides of her brain and at some point, the decision was made to turn off the ventilator supporting her breathing.

According to the Mirror article:

She was later diagnosed with the genetic disorder Biotinidase deficiency, which is so rare it affects just one in every 60,000 births.

Sufferers of the condition do not produce enough biotin – a vitamin which is essential for healthy cell growth.

The deficiency can be fatal if left untreated but will now be managed safely with tablets.

And today:

Bella, of Clacton-on-Sea, Essex, who turns two in January, is now learning to walk and talk and her hair is growing back.

Experts say she is around eight months behind other children her age but she is expected to catch up.

Francesca said: “She’s at nursery and to look at her you wouldn’t think she’s been through what she has.

Perhaps this Christmas “miracle” also holds a message about the need for hope and humility for those of us in the medical professions.

Merry Christmas and Happy Holidays to all!

 

 

LIVING WITH “LIVING WILLS”

In the early 1970s when I was a young ICU nurse, none of us medical professionals had even heard of a “living will”. There was a universal presumption for life and “quality of life” was something to be improved, not judged.

Nevertheless, sick people could and did refuse treatment and even check themselves out of the hospital against medical advice. When patients appeared to be dying, they or their families could agree to a “do not resuscitate” (DNR) order. Overly aggressive or useless treatments could be discouraged when such measures were considered medically futile or excessively burdensome for the patient. But one thing we didn’t do was offer to withhold or withdraw medical care like tube feedings to cause or hasten a patient’s death.

Unknown to us, all this began to change after Louis Kutner, a Chicago lawyer, wrote an article in the Indiana Law Journal titled Due Process of Euthanasia: The Living Will, A Proposal” in 1969. (emphasis added). By 1970, The Euthanasia Society of America (later renamed the Society for the Right to Die) distributed 60,000 living wills. In 1976, California passed the nation’s first “living will” law. Now, there are proposals to eventually include even physician-assisted suicide in “living wills”.

I use the common term “living will” to represent the wide variety of end of life documents that have evolved since the original “living will”, including the newest but problematic one called POLST (physician orders for life-sustaining treatment).

I wrote a 2001 article “Of Living Wills and Butterfly Ballots”   because I was concerned that many people were signing such documents with little knowledge of the history and problems with such documents that I witnessed as a nurse and ethics committee member. However, with the crucial help of a sympathetic media, court cases involving seriously brain-injured people like Terri Schiavo and government mandates such as the 1990 Patient Self-Determination Act have resulted in the heavy promotion of “living wills” as simple, worry-free documents. Now the federal government is set to begin paying healthcare providers for talking to all Medicare beneficiaries about such documents.

CAN “LIVING WILLS” BE HAZARDOUS TO YOUR HEALTH?

Recently, I talked to lawyers who expressed confusion and concern over the “living wills” they were asked to draw up. In addition, Medscape, a subscription website for medical professionals, and the American Medical News have published recent articles such as “Advance Directives May Be Hazardous to Your Health”  and “Clearing Up Confusion on Advance Directives”. The last article even warns

“misinterpretations of end-of-life documents too often result in lost lives or unwanted care” such as when “physicians incorrectly assume that DNR means not to treat a patient who is critically ill”.

When even doctors and lawyers are confused, there is a big problem. In the real world of medicine, I even heard some doctors say that if in doubt, it might be legally safer not to treat than to treat someone with a “living will” in an emergency because of lawsuits where a patient with a “living will” survived or had serious impairments.

SHOULD I EVEN HAVE A “LIVING WILL”?

When “living wills” first came out, I felt I was safer not to have one to make sure I received treatment. Later, I changed my mind. I felt it was safer to designate someone I trusted with the legal authority to make decisions if I was unable to speak for myself rather than just leave it to my family members, some of whom vigorously disagreed with my stance for feeding brain-injured people like Terri Schiavo.

I never tell people that they must or must not have a “living will” but everyone should be fully informed. I do encourage people to check out information sites like the Pro-Life Healthcare Alliance’s “Informed-A Guide to Critical Medical Decisions”  which has sections explaining ventilators, CPR (cardiopulmonary resuscitation), feeding tubes, misuse of opioids and sedatives as well as end of life considerations.

There are also several informative and protective “living will” documents from organizations like the Patients Rights Council and the American Life League. The National Right to Life Committee even has such documents online and specific to state laws.

SOME POINTS TO CONSIDER BEFORE SIGNING A “LIVING WILL” STYLE DOCUMENT

Here are some of my personal recommendations as a nurse before signing a standard “living will” or even a protective one.

1. Make sure the document is as short as possible, simple to understand and that the presumption for life is expressly stated so that if doctors are in doubt about your wishes, they should treat you.

What most people do not know is that “living will” style documents often go unread by doctors and nurses until a critical situation develops and time is of the essence. Even worse, some doctors and nurses still assume or misinterpret “living wills” as meaning the patient does not want treatment, especially if the patient is older or disabled.

2. Avoid vague terms like “significant recovery” and “terminal event” that have no objective medical standard and can easily be misinterpreted.

I’ve seen patients who have just had a stroke or head injury incorrectly judged “terminal” or “incurable by doctors. Such patients often get better with time and treatment. And, of course, any treatment that is medically futile or excessively burdensome to the patient can be ethically withdrawn later. I add the emphasis because now futility and burden are too often assumed to mean an inadequate “quality of life” or economic burden to the family or society.

3. Designate one person you trust to make your medical decisions with a backup person or persons.

Sometimes when only one person is the designated decision maker, he or she may be unavailable or incapacitated so a backup is important especially in a critical situation.

4. Consider not checking off particular treatments or conditions to be automatically refused.

Personally, I wanted a positive “living will” that only designates my decision maker and his/her right to make decisions about my care rather than signing a “living will” to refuse future treatment or set possible future conditions where I would want treatment stopped or withheld. Instead, I want all current options, risks and benefits of treatment fully explained to my decision maker based on my current condition.

5. Many “living wills” contain a section on pain with such sentences such as “I want my doctor to give me enough pain medicine to relieve my pain”. You might consider adding a phrase like “without hastening my death.”

I have seen unnecessarily high doses of pain medicine deliberately given to make a patient unconscious while food and water were stopped. Often, this was called “comfort care” instead of terminal/palliative sedation  but the result was hastening or causing death by dehydration and/or suppression of breathing.

Everyone wants and deserves adequate pain control at the end of life. Carefully increasing doses of pain medication and other measures work in virtually any situation and family members should advocate this for their loved ones.

CONCLUSION

There may be no perfect “living will” but as a former hospice nurse and family caregiver myself, I believe that dying people have a right to a good death with as few medical interventions as possible for comfort without deliberately hastening or causing death. The time before death may be short or long but I believe that people have the right to die at their own natural pace.

Death is not something to get over with as soon as possible. As some people with terminal illness have told me, they hated being treated as if they were already dead when they were still alive. They wanted to hear jokes, be with family and friends, go to church, etc. And since hearing is thought to be the last sense to go, I interacted with my dying patients in comas just as I did with my conscious patients.

The process of coming to terms with  death can be difficult at times but it also can be a meaningful time to review a life with all its joys and sorrows as well as a time for family and friends to show love, support and even healing.

The “Miracle” of Dying (in hospice without food and water)

Recently, a fellow nurse sent me an article she found disturbing titled “The miracle of dying” from the Los Angeles archdiocesan newspaper.

The article is ostensibly about the laudable goal of promoting emotional and spiritual healing for a dying person with comprehensive hospice and palliative care when cure is not possible.

Unfortunately, the article begins with the story told by Diane, dean of nursing at a Catholic university in California, about her father’s death. Diane’s frail, 99 year old father living in a Florida assisted living facility with no apparent life-threatening illness called her to say “I’ve outlived my usefulness. I’m ready to go”. When he decided to quit eating and drinking, Diane arranged for hospice care.

According to the article, it wasn’t long before the hospice nurse called back, saying it would take about 48 hours for her father to die and Diane took a flight to Florida to be there when he died.  The obvious impression left is that her father’s wish to stop eating and drinking was granted by the hospice.

Was Diane’s father evaluated physically and psychologically?  I have seen many elderly people who also felt their lives were useless successfully treated for depression as well as elderly people who had physical problems with eating regain their health with professional help. Why would we just send them to a hospice without exploring other options?

When I worked in hospice years ago, we would never have approved deliberate starvation and dehydration even at the patient’s request. We followed the trusted hospice philosophy that we neither hasten nor prolong the dying process. Unfortunately, we are seeing that ethical standard eroding to just honoring a patient’s “choice” to die. Ominously, state reports in Oregon, the first state to legalize physician-assisted suicide show that over 90% of reported physician-assisted suicide victims were enrolled in hospice.

Terminal Sedation

The rest of the article discusses death and California’s new physician-assisted suicide law with an ethicist and a doctor connected with Catholic health care institutions. While neither man supports the new California assisted suicide law, the comments by Roberto Dell’Oro, director of Loyola Marymount University’s Bioethics Institute are particularly alarming. Note this section from the article:

“For years, doctors have performed what’s known as “terminal sedation,” not to end somebody’s life but to make their patients more comfortable. Estimates of very seriously ill patients being terminally sedated have ranged from 2 to more than 50 percent. But the subject is rarely brought up in public.

One of the pillars it rests on goes back to the “double-effect” rule attributed to St. Thomas Aquinas in the 13th century, which justifies killing in times of war and for self-defense.

Regarding end-of-life matters, the principle posits that even when there’s a foreseeable bad outcome (death), it is morally acceptable if the intentional good outcome (relief of pain) outweighs it.

‘It’s a matter of stopping feeding and increasing pain medication that leaves you to die,’ explained Dell’Oro. ‘It’s not the practice of assisted suicide. Because the motivation, the intentionality of the physician remains the alleviation of pain, not the killing of the patient. That’s the fundamental difference.’ (emphasis added)

Unfortunately, this ethicist’s quote echoes Jack Kevorkian’s defense that he was just “relieving suffering” not mercy-killing his victims when he hooked them up to his death machine. There is a big difference between adequately treating pain even if that would diminish a person’s consciousness and deliberately rendering a person unconscious until death while withholding food and water. And now we have ethicists supporting terminal sedation for even “intractable emotional or spiritual anguish”.

COMPASSION AND CHOICES

Compassion and Choices is the pro-assisted suicide organization formerly known as The Hemlock Society and made famous by the Brittany Maynard physician-assisted suicide case. On its’ website, Compassion and Choices describes voluntary stopping of eating and drinking (VSED) and terminal sedation as good end of life options:

Voluntarily Stopping Eating and Drinking – When patients die naturally of chronic diseases, such as cancer, bodily changes take away their appetite, and they stop eating before they die. Some people decide to speed up the dying process by voluntarily stopping eating and drinking (VSED), which also relieves some of the symptoms common to dying. If a patient is already close to death, VSED usually leads to death in one to three weeks. Many people have used this method successfully….C&C believes hospice care is essential during VSED.” (Emphasis added)

In the case of terminal sedation which they call “palliative sedation”, it is described as:

Some dying patients experience so much pain or such unmanageable symptoms they cannot get relief from medications unless the dose is high enough to make them unconscious. Palliative sedation provides enough medication to keep the person unconscious and continuously pain and symptom-free. All nutrients and fluids are stopped, and the person usually dies within a few days. Patients using palliative sedation should be monitored around the clock to be sure the sedation is adequate. Intensive monitoring can be done at home under hospice care. (Emphasis added)

Of course, Compassion and Choices is working to legalize physician-assisted suicide throughout the US but, in the meantime, note that it endorses VSED (voluntary stopping of eating and drinking) and terminal sedation in hospice as a legal alternative.

When I was a hospice nurse in the mid-1990s, terminal sedation and withholding food and water were unthinkable.  We worked hard to make sure our terminally ill patients and their families had physical, emotional and spiritual support. It was gratifying to hear our patients and families tell us how meaningful and even healing the experience was. I even saw some dying people unexpectedly linger until an issue was resolved, a loved one came to the bedside or even until the family was ready.

When we try to just get death over with as soon as possible, we are really abandoning our dying patients and their families at  one of the most important and momentous events in their lives. We need to respect death not accelerate it.