How I Spent My Summer Vacation 2020

Only the most avid readers of this blog may recall a similarly titled posting, How I Spent My Summer Vacation, from August 1, 2016.

St. Joseph Hospital Main Campus

Well, here it is nearly five years later and I have another harrowing experience to tell you about.

Three months ago, I started having some pain in my left shoulder while walking. (Actually, the shoulder pain started three years ago. But after a stress test scheduled by my GP a year ago, to confirm if this was discomfort was heart related, and the test coming back negative, I decided that the pain was structural. I just figured that I had bursitis.) In fact, all symptoms disappeared after the stress test. Go figure!

Anyhow, the shoulder pain reappeared in March. This time around, it began to radiate down my arm. Soon I couldn’t do any kind of walking, let alone hiking, without discomfort. This was a bit of a problem because I’m an avid walker. Two months ago, the shoulder pain began to radiate not only down my arm but into my arm pit and then into my chest and back.

By this time even I knew that this wasn’t no stinkin’ bursitis.

At the behest of my GP, I reached out to my cardiologist again. I had just had a major pain episode that nearly brought me to my knees, and I wanted his input. At the appointment the cardiologist showed only minor concern. He said he wanted me to do another stress test in 30 days and then see him again in six weeks, the end of July. I couldn’t believe it. I was exhibiting all the classic symptoms of angina and I thought I needed more than a promise of a stress test and a follow visit.

At the end of the appointment, as the doctor was leaving the exam room, I said; “What am I supposed to do about all this crippling pain?” “Oh,” he replied, “I’ll write you a prescription for nitro glycerin. When you begin to experience pain, pop a tab under your tongue. This will give you relief.” And so, it did. It was kinda miraculous actually.

Problem was, I needed to pop a tab at least once a day, often twice a day.

When my GP discovered that I was doing so much nitro, he became very proactive. He ordered a chest x-ray, a CT scan, and some blood work. He wanted to rule out lung problems among other things.

When my first nitro glycerin script was nearly exhausted, I call the cardiologist for a refill. His nurse freaked out at the amount of nitro I was taking and said; “Nitro glycerin is supposed to be used sparingly, for emergencies.” I replied; “Well, then I’m having emergencies each and every day, and often twice a day.”

Apparently, this nurse’s concern lit a fire under my cardiologist. She told me that the doctor now wanted me to skip the stress test, still weeks in the future, and come in for an angiogram. He had an opening on July 2nd. Could I last two more weeks? I didn’t think so.

Meanwhile, my GP wanted me to consult with another cariology practice in Bellingham, 45 miles from where I live. Since I had lost all confidence in the local cardiologist, I agreed. In a matter of hours, I was set up with the PeaceHealth cardiology practice. I was to call the next day and set up an appointment with the next available cardiologist. Things were that critical. Last Friday morning I called and set up an appointment for the following Tuesday.

PeaceHealth Logo

My GP also insisted that I call 911 if my pain increased.

That night, Friday night, it did. Despite popping two nitro glycerin tabs in three hours I was still in acute pain and short of breath.

At about 10:30pm I woke up Steve and asked him to drive me to Emergency Receiving at Island Hospital.

Once in the ER, I was immediately strapped to a heart monitor, blood was drawn, and arrangements were made to medivac me to St Joseph Hospital in Bellingham. The first blood test revealed normal levels of the cardiac enzyme which measures the levels of enzymes and proteins that are linked with injury of the heart muscle. I thought that was good news. Four hours later, still in the Island Hospital ER, there was another blood draw. This time the cardiac enzyme reading had spiked. The doctor told me I must have had a heart attack in the interim.

I languished for ten hours in the Island Hospital ER. They were having a problem finding transportation to Bellingham.

At 9:30am Saturday morning I was finally on my way to St. Joe’s.

Once there, I was placed in the Cardiac ICU where I was poked and prodded to within an inch of my life. I also got an echocardiogram. I had had no food or water since the previous evening. I was exhausted and, I’ll admit, frightened.

Being the good little end of life educator that I am, I had the foresight to bring along a copy of my POLST (Physician Orders for Life-Sustaining Treatment) form. The ICU nurses were so surprised that I had this important document with me. They said they never see patients being this proactive.

At the top of the POLST form, the very first question asked is about Cardiopulmonary Resuscitation Orders. One can either choose: YES CPR: Attempt Resuscitation, including mechanical ventilation, defibrillation and cardioversion (or) NO CPR: Do Not Attempt Resuscitation. I had chosen the second, NO CPR. I hadn’t come to this decision lightly, but it did reflect my deepest held feelings about end of life care for myself.

Later that afternoon I had my first encounter with the cardiac surgeon. He sauntered into my room as brusque as you please and announced that he wouldn’t even consider the life-saving treatment I needed, an angioplasty, if I didn’t change my POLST form to allow a full code should complications arise during the procedure. I was absolutely stunned! I was being held hostage at this most vulnerable point of my life. And for what?

Cardiac surgeons are at the pinnacle of the medical pantheon and most have egos that surpass their bountiful skills. They almost never encounter resistance from anyone, least of all from a lowly patient. But I stood my ground.

“Are you telling me that you won’t save my life if I don’t grant you a full code?”

He responded; “Yes, my hands are tied.”

I couldn’t believe my ears. I tried to explain why I had chosen the DNR (Do Not Resuscitate). He just blew me off. He was so condescending and patronizing. My efforts to defend my choices fell on deaf ears. I could just imagine him thinking; how adorable is this? A layman trying to play doctor with the big boys? The standoff continued.

“Why do we even have POLST forms?” I asked.

“They are for emergencies.” He responded.

“So, and EMT (Emergency Medical Technician) or an ER doc would be constrained by my POLST, but not you, a cardiologist? I see! Actually, I don’t see. This is ridiculous.”

He just stared at me.

You know how this is gonna end, huh?

In the end I sheepshly relented. What could I do? I was so bummed.

The cardiologist walked out of the room without another word and I had no idea where I stood.

Hours later, I asked one of the nurses; “Will I be getting the angiogram, or not?” He didn’t have an answer. Nothing like adding anxiety to an already overburdened heart.

Around 6:00pm two burly nurses stopped outside my room with a gurney. “Let’s get you up here.” One said pointing to the gurney. “What’s going on?” I asked. “Time for your angioplasty.” And just like that I was wheeled off.

I guess it was determined that my case was critical, and no time could be wasted in attending to me, POLST form be damned. My echocardiogram showed a major blockage in my already weakened heart. An hour and a half later I was the recipient of two brand-spankin’ new heart stints, don’t cha know.

Heart Stent

I’ll spare you the gory details of my recovery. I’ve gone on too long already. Suffice to say that with the assistance of a cohort of amazing nurses and other support staff, I am here to relate this story to you. God bless ‘em all!

There are a lot of lessons to be learned here, not least of all is our right to choose the end of life path we desire despite the pressures of conflicting interests. And how we ought to stick to our guns because our wishes are sacred all bullying aside. But the biggest lesson and…

The Moral Of This Story Is
My friends, life is short! Live every day like it’s your last. Be kind to yourself and those around you. Because, in a twinkling of an eye, it can and WILL be over.

The End

End-Of-Life Planning Is A ‘Lifetime Gift’ To Your Loved Ones

By Kavitha Cardoza

Talking about death makes most of us uncomfortable, so we don’t plan for it.

That’s a big mistake, because if you don’t have an end-of-life plan, your state’s laws decide who gets everything you own. A doctor you’ve never met could decide how you spend your last moments, and your loved ones could be saddled with untangling an expensive legal mess after you die.

Betsy Simmons Hannibal, a senior legal editor at legal website Nolo, puts it this way: Planning for the end of life isn’t about you. “You’re never going to really get the benefit of it. So you might as well think about how it’s going to be a lifetime gift that you’re giving now to your parents or your partner or your children. It really is for the people you love.”

Here are some simple, practical steps to planning for the end of life. These tips aren’t meant to be legal or medical advice, but rather a guide to ease you into getting started.

1. Name an executor.

If you’re an adult, you should have a will, says Hannibal. Estate planning is not just for the rich. “It’s not just about the value of what you own. It’s also the feelings that you and your loved ones have about what you own.”

If you own lots of valuable stuff — real estate, trust funds, yachts — you probably need a lawyer. But for most of us, a simple document could do. Your state or county bar associations usually keep a list of lawyers who do this pro bono. Or you could download an online form like Quicken WillMaker & Trust for less than $100. (Full disclosure: Hannibal works for Nolo, which owns Quicken WillMaker & Trust.)

She says the first thing you do is name (in writing) a person whom you trust to take care of everything when you die. In most states that person is called an executor; in some they’re called a personal representative.

Hannibal says it’s a good idea to choose someone from your family. “The most important thing is that you have a good relationship with them — and also that they have a good attention to detail, because it’s a lot of work to be someone’s executor.”

An executor would have to, for example, find all your financial assets and communicate with everyone you’ve named in your will. It’s a big ask, so Hannibal says just be upfront. She suggests asking the person directly, “Would you be comfortable wrapping up my estate when I die?”

2. Take an inventory.

List everything you own, not just things that are financially valuable — such as your bank accounts, retirement savings or car — but also those things that have sentimental value: a music or book collection, jewelry, furniture. Then list whom you want to leave what to.

If you have young children, name a guardian for them. Choose carefully, because that person will be responsible for your child’s schooling, health care decisions and value system.

Hannibal says pets are considered property under the law, so she suggests naming a new owner so that the state doesn’t do it for you.

Digital accounts are also part of your property. This includes social media accounts, online photos, everything in, say, your Google Drive or iCloud, online subscriptions, dating site profiles, credit card rewards, a business on Etsy or Amazon. Hannibal suggests keeping a secure list of all those accounts and the login and password details. Let your executor know where the list is.

Just as you write out specific instructions about your physical belongings, be clear about what you’d like to happen with your online information.

She says it’s better not to have a handwritten will, because proving you wrote it will require a handwriting expert. So keep it simple. Just type out your wishes and have two witnesses watch you sign and date it. Then have them do the same. Hannibal says by signing it, “they believe that the person who made the will is of sound mind, and that’s a pretty low bar.”

You don’t need to file your will anywhere; neither do you need to get it notarized for it to be legally binding. And don’t hide it. Hannibal says just tell your executor where you’ve kept a copy.

Remember that your decisions will change over time. So if you have a child, buy a house or fall out with a family member, update your will.

3. Think about health care decisions.

Your will takes care of what happens after you die. An advance directive is a legal document that covers health care and protects your wishes at the end of your life.

There are two parts to an advance directive. The first is giving someone your medical power of attorney so the person can make decisions for you if you can’t. The other part is called a living will. That’s a document where you can put in writing how you should be cared for by health professionals.

Jessica Zitter is an ICU and palliative care physician in Oakland, California. She says that we’ve become experts at keeping people alive but that quality of life can be forgotten.

She has seen thousands of situations of loved ones making difficult and emotional decisions around a hospital bed. It’s worse when family members disagree about a course of action.

You know the saying “The best time to plant a tree was 20 years ago. The second best time is now”? Zitter says with the coronavirus in the news every day, more people are realizing that these end-of-life conversations are important. “That tree was always important to plant. But now we really have a reason to really, really plant it. … That time is now.”

You may have heard of Five Wishes, which costs $5 and will walk you through choices, or Our Care Wishes, which is free.

4. Name a medical proxy.

Pallavi Kumar is a medical oncologist and palliative care physician at the University of Pennsylvania. Kumar says the most important medical decision you can make is to choose a person who can legally make health care decisions for you if you can’t. This person is sometimes called a medical proxy or a health care agent. Naming the person is the first part of the advance directive.

“Think about the person in your life who understands you, your goals, your values, your priorities and then is able to set aside their own wishes and be a voice for you,” she says. You want someone you trust who can handle stress, in case your loved ones disagree on what to do.

5. Fill out a living will.

After you’ve chosen your medical proxy (and named a backup), you need to think about what kind of care you want to receive. There’s no right or wrong; it’s very personal. The document that helps you do that is called a living will. It’s part two of the advance directive.

A living will addresses questions such as “Would you want pain medication?”; “Do you want to be resuscitated?”; and “Would you be OK being hooked up to a ventilator?”

Kumar says she asks her patients what’s important to them and what their goals are. For some with young children, it means trying every treatment possible for as long as possible, no matter how grueling.

“They would say, ‘If you’re telling me that a chemotherapy could give me another month, I want that month. Because that’s another month I have with my 6-year-old.’ ”

Other patients might want the exact opposite. “They would say, ‘I’ve gone through a lot of treatments and I … feel I’m not having as many good days with my kids. So if the disease gets worse, I want to spend that time at home.’ ”

Kumar says even among patients who are very sick with cancer, fewer than half have had conversations about how they want to die. So talk about your wishes. Once you’ve filled out the advance directive forms, share your decisions with your medical proxy, your loved ones and your doctor.

6. Don’t forget the emotional and spiritual aspects of death.

How you want to die is personal and about much more than just the medical aspect. For some, it’s about being at peace with God; for others, it’s being kept clean. Still others don’t want to be left alone, or they want their pets close by.

Angel Grant and Michael Hebb founded the project Death Over Dinner to make it easier for people to talk about different aspects of death as they eat. “The dinner table is a very forgiving place for conversation. You’re breaking bread together. And there’s this warmth and connection,” says Grant.

Some of the emotional and spiritual questions people talk about are “You were just in a big quake and death is imminent. What are you concerned about not having done?”; “What do you want to be remembered for?”; and “If you could have any musician play at your funeral, who would it be?”

Grant says reflecting on death automatically forces you to think about your life. “That’s the magic of it,” she says.

“We think it’s going to be morbid and heavy. But what these conversations do is they narrow down our understanding of what matters most to us in this life, which then gives us actionable steps to go forward living.”

Grant doesn’t believe a “good death” is an oxymoron. “A good death is subjective, but there are some things that I have heard over and over again for many years at death dinners. … A good death is being surrounded by love, knowing you have no emotional or spiritual unfinished business.”

Complete Article HERE!

Last wishes and clear choices

– Learning how to talk about end-of-life care

Before patients can state their preferences about dying, they need to talk about them first.

By

Conversations around end-of-life medical care can be challenging. Consider someone I’ll call Mrs. Jones, an elderly patient with advanced heart disease. When her doctor asked her to discuss the kind of care she wanted to receive at the end of her life, Mrs. Jones said that she had devoted a lot of thought to the matter and had clear instructions she wanted her family to follow.

First Mrs. Jones wanted to be buried near her family – above ground – and she wanted her grave to be covered with yellow and white flowers. Second, she wanted to be laid out not in a dress but in her nightgown and robe. And finally, she wanted to be buried with a treasured photograph of her boyfriend, which showed a handsome young man in military uniform.

But her doctor was asking a different question. Specifically, she needed to know how Mrs. Jones wanted the medical team to care for her as she was dying. Mrs. Jones said that she hadn’t thought about end-of-life care, but she would like to learn more about her options.

After discussing the choices, Mrs. Jones expressed some clear preferences. “I know for a fact that I not want to undergo chest compressions, and I don’t want anyone using tubes to breathe for me or feed me.” Her doctor arranged for Mrs. Jones’ daughter to join the conversation. The conversation wasn’t easy – Mrs Jones and her daughter cried as they talked – but afterward they were grateful that they had shared everything so openly.

Shilpee Sinha, MD, Mrs. Jones’ doctor, has these conversations every day. She is the lead physician for palliative care at Methodist Hospital in Indianapolis, where she specializes in the care of dying patients. She also teaches medical students and residents how to provide better care for patients at the end of life.

Sinha is part of a relatively small cadre of such doctors nationwide. It is estimated that only about 4,400 doctors specialize in the care of terminally ill and dying patients. The US is currently facing a shortage of as many as 18,000 of these specialists. There is only one palliative care specialist for 20,000 older adults living with severe chronic illness.

On average, 6,800 Americans die every day. The majority of deaths are anticipated. Consider that about 1.5 million people enter hospice care each year. This means there is ample opportunity for many patients to talk with their doctors and family members about end-of-life care.

Before patients can explore and express their preferences about dying they first need to have a conversation like the one between Sinha and Mrs. Jones. In too many cases, no such conversation ever takes place. Patients often don’t know what to ask, or they may feel uncomfortable discussing the matter. And doctors may never broach the subject.

At one end of the spectrum, doctors can do everything possible to forestall death, including the use of chest compressions, breathing tubes, and electrical shocks to get the heart beating normally again. Of course, such actions can be traumatic for frail and dying patients. At the opposite end, doctors can focus on keeping the patient comfortable, while allowing death to proceed naturally.

And of course, end-of-life care can involve more than just making patients comfortable. Some patients lose the ability to eat and drink, raising the question of whether to use tubes to provide artificial hydration and feedings. Another issue is how aggressively to promote the patient’s comfort. For example, when patients are in pain or having trouble breathing, doctors can provide medications that ease the distress.

Another issue is ensuring that the patient’s wishes are followed. This does not always happen, as orders can be lost when patients are transferred between facilities such as hospitals and nursing homes.

Fortunately, most states across the country are beginning to make available a new tool that helps doctors and patients avoid such unfortunate outcomes. It is called POLST, for Physician Orders for Limiting Scope of Treatment. First envisioned in Oregon in the early 1990s, it grew out of a recognition that patient preferences for end-of-life care were too frequently not being honored. Typically, the doctor is the one to introduce POLST into the conversation, but there is no reason patients and family members cannot do so.

The cornerstone of the program is a one-page form known in Indiana as POST. It consists of six sections, including cardiopulmonary resuscitation (CPR); a range of other medical interventions, from admission to the intensive care unit to allowing natural death; antibiotics; artificial nutrition; documentation of the person with whom the doctor discussed the options; and the doctor’s signature.

The POST form helps to initiate and focus conversations between patients, families, and doctors around end-of-life care. It also fosters shared decision making, helping to ensure that all perspectives are taken into account, and ensuring that patient wishes are honored.

POST can be applied across all settings, from the hospital to the nursing home to the patient’s home. It can be scanned into the patient’s electronic medical record, ensuring that it is available to every health professional caring for the patient. And it does not require a notary or an attorney (or the associated fees), because it is a doctor’s order.

Of course, merely filling out the form is not enough. The patient’s wishes can be truly honored only if the patient and family understand the options, have the opportunity to pose questions, and trust that their wishes will be followed. In other words, POST achieves its purpose only if it is based on the kind of open and trusting relationship Dr. Sinha had developed with Mrs. Jones.

Providing such care isn’t easy. “Our health care system pays handsomely for curative care,” Sinha says, “but care at the end of life is probably the most poorly compensated kind that doctors provide. This can make it difficult to get hospitals and future doctors interested in it.” Thanks to initiatives such as POLST and doctors such as Sinha, however, such care is finally getting more of the attention it deserves.

Complete Article HERE!

How COVID-19 May Reframe End-of-Life Care Planning Engagement

The COVID-19 pandemic has renewed patient appreciation for end-of-life care planning, pushing providers to explore best practices for engaging these conversations.

By Sara Heath

For years, the concept of end-of-life care planning has been elusive to intensive care unit (ICU) providers. Not a lot of patients have engaged in these types of communications, and it hasn’t been hard to see why: end-of-life care planning is by nature a grim topic and can make a lot of people — including clinicians — feel uncomfortable.

But that’s started to change now that the COVID-19 pandemic has gripped the nation. At this point, over 100,000 people have died from the novel coronavirus, and it’s pushed end-of-life care planning as a key topic of conversation.

“The virus and the pandemic shined an important light on end-of-life care planning and the need for people who don’t have medical problems to still consider what their wishes would be. That’s because this virus can unfortunately strike folks who are healthy,” said Lauren Van Scoy, MD, a pulmonary and critical care physician at Penn State.

The number of patients coming into the ICU with an advance directive or having discussed some kind of end-of-life wishes with their family members of providers was scant prior to the pandemic. Patients and providers alike have long been uncomfortable with these types of conversations, largely because talking about death can be difficult and scary.

Per 2016 data, many hospitals don’t have much of a protocol for engaging patients in advance care planning or recording end-of-life wishes. Meanwhile, just under half of providers are uncomfortable with addressing the topic with their patients because they are unsure of what to say, the survey out of the John A. Hartford Foundation, the California Health Care Foundation, and Cambria Health Foundation revealed.

Several providers said that they struggle with identifying the proper time to broach care planning with their patients. Forty-eight percent of providers didn’t want their patients to think that they were giving up on them, and 46 percent didn’t want their patients to give up hope.

But this lack of advance care planning between patient and provider or patient and family member can have negative consequences down the line. For the patient, it decreases the likelihood she will receive hospice care at the end of her life and increases the odds she will receive intensive therapies, which can be both costly and unwelcomed by the patient.

And for the family, limited understanding of a loved one’s end-of-life care wishes can lead to serious distress.

“Care planning is so important because not only does it help the patient to receive care that’s consistent with their wishes, but it also helps the family members to have a lower-stress experience,” Van Scoy explained. “They have less psychological morbidities afterwards, and less stress related disorder.”

The data show that up to 30 percent of families who have to make end-of-life decisions experience post-traumatic stress disorder symptoms, Van Scoy pointed out, referencing a seminal study published in American Journal of Respiratory and Critical Care Medicine.

“That’s one of the things that advanced care planning can help to reduce the likelihood of, the stress related symptoms, so that’s why it’s really important for both the patient and the family,” she added.

Of course, advance care planning hasn’t totally been unheard of. In 2015, CMS said it would start paying Medicare providers for holding advance care planning talks with patients, with the goal of improving the quality and experience of end-of-life care and potentially decreasing the use of costly and intensive therapies. Increasing reimbursement for these activities potentially served as an incentive to increase engagement.

And older adults, knowing they may be nearing the end of their lives, have also been at least somewhat receptive to these conversations.

“As people get older, they’re more likely to do advanced care planning,” Van Scoy said, suggesting that this is not enough.

“As we know, medical catastrophe can happen for anyone of any age. We’re often faced with patients, particularly in the ICU, who have not had conversations about what their goals are, what their wishes are, what their preferences are. Families are often quite distressed when having to make decisions.”

But again, that trend has started to change, as more Americans face the reality that they could contract the novel coronavirus. And although COVID-19 has a pronounced impact on individuals with comorbidities, the fact of the matter is anyone could succumb to it.

“The virus has given us an opportunity to have that teachable moment to show that, whether you were diagnosed with coronavirus, or have cancer or a car accident, or some other sort of acute and unexpected illness, it’s always good to have good care planning done in advance,” Van Scoy stated.

“The coronavirus pandemic has allowed people to think about it in a new context as opposed to, ‘advanced care planning is just for old and sick people, not for me,’” she continued. “Now we’re having a conversation nationally about ventilators and ICU use and people needing emergency critical care. People are thinking, ‘gosh, I very well could end up on a ventilator.’ The coronavirus has changed the conversation to be more relevant, more pertinent, and brought it to a broader scope of Americans, not just elderly or those with illness.”

And while patients and providers alike are facing a renewed appreciation for advance care planning, Van Scoy has uncovered new strategies to make these conversations more palatable. After all, just because more patients recognize the need for advance care planning doesn’t make these conversations any less uncomfortable.

As part of her research on patient experience and communications in the ICU, Van Scoy has developed a game that brings advance care planning into the community in an agreeable way. The game, titled Hello, can be delivered in both the healthcare facility or in a community-based setting as it pushes patients to consider what is important to them at the end of their lives.

“The Hello tool is a game that allows patients and their families and friends to come together and talk in a way that’s sort of less serious and less intrusive,” Van Scoy explained. “The game features questions that are asked in a way that are easy to answer. Questions are things like ‘what music would you want to be listening to on your last day of life’ or ‘what are three non-medical facts that your doctors should know about you.’ It approaches this topic in a very soft way, but yet it’s still getting into the meat of the problem.”

And the qualitative data shows this approach has been effective, especially in traditionally marginalized populations for whom end-of-life care planning is even less prevalent. Van Scoy largely credits this to the community-based setting in which she has deployed Hello.

“We leverage those networks to get individuals set up to have these conversations in places outside the healthcare system,” Van Scoy noted. “Users are comfortable and they can lean on each other as opposed to leaning on the healthcare system, which in underserved populations have had some historic problems with trust.”

This new information about carrying out advance care planning will be essential going forward, as the COVID-19 crisis ideally renews patient and provider appreciation for these conversations. As the healthcare industry works to adapt to the novel coronavirus, understanding the best ways to address end-of-life wishes will help providers treat their ailing patients with dignity.

Complete Article HERE!

When is the best time to talk about end-of-life decisions with your teen who has cancer?

 
BY: Kathryn DeMuth Sullivan

A study published recently in JAMA Network highlights the need for improved pediatric advanced care for adolescents with terminal cancer. The research reveals a gap in understanding between parents and children when initiating and discussing critical conversations about end-of-life decisions.

“Advance care planning interventions are needed to improve families’ awareness and understanding of their teens’ end-of-life choices,” says principal investigator Maureen E. Lyon, Ph.D., a Children’s National Hospital clinical psychologist.

“Teens need to have a voice in their care and families are eager to know what their teens want, but those conversations can be difficult,” says Dr. Lyon. “Advance care planning interventions for parents and adolescents create a space where they can ask questions and be honest with each other.”

While families with adolescents with cancer are often spinning with the daily struggle of life, the authors say that clinicians presume that families understand adolescents’ treatment preferences for end-of-life care – and this can cause miscommunications. As has been seen not only in the pediatric setting, a lack of advance care planning is associated with increased hospitalization, poor quality of life, and legal actions.

The study involved a survey of 80 adolescent-family dyads (160 participants) from four tertiary care U.S. pediatric hospitals. From July 16, 2016, to April 30, 2019, the families were exposed to Family-Centered Pediatric Advance Care Planning for Teens With Cancer intervention sessions.

The results showed that family members’ understanding of their adolescent’s beliefs about the best time talk about end-of-life decisions was poor, with 86% of adolescents desiring an early conversation on the topic (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but with only 39% of families understanding this. This was particularly when it came to the topics of dying a natural death and being off life-support machines. Nevertheless, families’ did seem to have an excellent understanding of what was important to their adolescents in regards to wanting honest answers from their physician and understanding treatment choices.

The findings from the study can be found here in the article “Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care.”

Complete Article HERE!

No time like the present

– End-of-life plans and the pandemic

By Sarah Skidmore Sell 

Coronavirus has more people addressing their end-of-life planning. And for those who haven’t, it’s a great time to take it on.

People are traditionally rather hesitant to take the steps that experts suggest — creating an advance directive, writing a will and more — in part because they don’t want to ponder their own mortality. But the coronavirus pandemic has sharpened awareness and focused concern on this front. Several estate attorneys, online legal service providers and life insurers say they’ve seen an uptick in interest since the coronavirus hit.

Consider the advice of Jenni Neahring, a kidney specialist and palliative care doctor at St. Charles Hospital in Bend, Oregon who works daily with patients with chronic and serious illnesses. She says it’s better to make these decisions before an emergency to avoid putting extra stress and urgency on loved ones if something should happen.

If a patient is unconscious, health care professionals must spend critical time hunting down relatives or friends to help determine their preferred next steps.

Things have gotten harder with COVID-19, Neahring said, as no one is allowed in the hospitals with these patients and those on ventilators cannot speak for themselves.

“It has brought into sharp relief how necessary these conversations are and how much worse it is to have to do them at the end,” she said.

Here are a few things you can do now to help you and your loved ones later:

POINT PEOPLE

Start with picking your point people: who will make medical decisions for you if you cannot speak for yourself? This person is known as the health care proxy. They will be named in a legal document known as the durable power of attorney for health care.

Then choose someone who can oversee your financial affairs, such as paying your mortgage or other bills, if you are incapacitated. This person would be given financial power of attorney. It doesn’t have to be the same person as your health care proxy.

Choose someone you know well and trust for these roles. Pick a backup as well, in case your first choice is unavailable.

WRITE IT DOWN

After you’ve addressed the health care and financial representatives, consider writing a living will, or “advanced directive.” An advanced directive says exactly what medical care you do and do not want. Each state has its own advanced directive form; they can be found at the Medicare website.

If you are having trouble getting started, check out online resources such as The Conversation Project, Prepare for your Care or AARP’s website.

Consider writing a will to let people know what to do with your assets after you die and who you choose to be guardian of any children. Without a will, it won’t be up to you who raises your kids and your estate could end up in probate, potentially causing more headaches and costs for those you leave behind.

“The takeaway is while this is a current need, it’s always a need,” said Chas Rampenthal, general counsel at LegalZoom.

Many people look at end of life planning, including wills, estates and trusts, as an issue for the wealthy, but that’s untrue, Rampenthal said.

“It’s not about how much you have, it’s about making your wishes known,” he said.

And while life insurance isn’t always considered part of end of life planning, it can be an important step to protect your family financially. Term life insurance, a policy in place for a certain period of time, works best for most families, versus whole life, which is much more expensive and complex.

“This is just prompting people to eat their vitamins and do something they should be doing anyway,” said Peter Colis, cofounder and CEO of Ethos, an online life insurance company.

GETTING HELP

It’s not a great time to meet with people in person. But estate attorney Matthew D’Emilio said that most lawyers are able to arrange phone, video or other consultations during the pandemic. Many states have provided alternatives for witnessing and signing documents to cope with the social distancing rules.

If the idea or cost of seeing an attorney is too daunting, there are many online options for legal documents, some of which provide direct consultation.

SHARE YOUR WISHES

Let your friends and family know what you want, who is in charge and what documents you have. Provide a copy of critical paperwork to your loved ones. Share an advanced directive with your physician as well.

Neahring suggests keeping the name and number of your medical decision maker in your wallet for emergencies.

And while most details will be addressed in the legal documents, some experts suggest writing a short letter reiterating your preferences and reasoning to help provide clarity and comfort to your loved ones later on.

Complete Article HERE!

Now more than ever we need to talk about how we want to die

Whilst our primary goal is to support patients to recovery, we must also ensure that patients who are no longer benefiting from intensive care are supported too.

By Dr Anushka Aubeelack

The coronavirus pandemic has brought death and dying to the forefront of the public’s consciousness.

As an anaesthetist working in a London intensive care unit, it is part of my daily life. Within a matter of weeks it has become everyone’s business.

Throughout my career I have been involved in the care of critically-unwell patients. All intensive care doctors accept that in spite of our best efforts, some people will not survive.

Whilst our primary goal is to support patients to recovery, we must also ensure that patients who are no longer benefiting from intensive care are supported too, so they may die without discomfort. This is true of any intensive care ward, at any time, but Covid-19 has further highlighted the importance of good end of life care, as we are seeing record numbers of very unwell people admitted to the hospital.

When the intensive care team is called to admit a patient, we try our best to establish their wishes with regards to treatments.

Have they thought about intensive care and life support? If their heart or breathing was to stop, have they thought about whether they would want the medical team to attempt cardiopulmonary resuscitation, for instance?

Whenever we can, we explain clearly what the treatment options are and the risks and benefits of each; we ask them what their own priorities are and answer any questions they may have. Then we adjust the treatment goals to best suit that individual patient.

But sadly, there are times where this communication is not possible and both the team and patient are robbed of that opportunity. That is why I am so passionate about what is known as advance or anticipatory care planning, or what I prefer to call advance life planning.

This is where people are given the opportunity to talk through their priorities and concerns for the end of life and translate them into a plan for their future care and treatment. This may include a Living Will (a legally-binding document also known as an Advance Decision or Directive) to refuse certain treatments and an Advance Statement to record other preferences for care.

People may also wish to nominate a trusted person to make healthcare decisions for them if they become unable to, using a Lasting Power of Attorney for Health and Welfare. These documents are then shared with healthcare professionals and loved ones.

I appreciate that in these uncertain times people can feel powerless and voiceless, but advance care planning can empower you and ensure your voice is heard clearly

All intensivists can recount a story in which, acting in good faith, a patient was put on to full life support, only to subsequently learn from loved ones that this action was against that patient’s end of life wishes.

This is not only heart-breaking for all involved, going against our core belief to ‘do no harm’, but it also denies that person the chance to be kept comfortable in a place of their choosing to say a meaningful goodbye.

This pandemic means we can no longer shy away from death. It is an inevitability of life and conversations about death should no longer be taboo.

It is now more essential than ever to talk to our loved ones about what a good death would mean to us as an individual.

For some, the most important thing might be remaining as pain-free as possible. For others, the priority might be to remain as lucid as possible until the end, or dying in a place of their choosing, whether that is at home or at a hospice, surrounded by their loved ones.

Some may want to accept all efforts to keep them alive as long as possible in spite of the risks. An Advance Statement can record information like this, and while it is not legally-binding like a Living Will, it should be taken into account if decisions need to be made on your behalf about your care and treatment. 

I appreciate that in these uncertain times people can feel powerless and voiceless, but advance care planning can empower you and ensure your voice is heard clearly. It also assists medical professionals like myself to continue to act in the best interests of our patients by respecting their wishes.

By recording them as clearly as possible now and sharing them with your family and your GP, you will be far more likely to get the care and treatment that’s right for you when the time comes.

Know that if you do want to put plans in place, you are not alone.

The charity Compassion in Dying – for which I am clinical ambassador – aims to help people prepare for the end of life; how to talk about it, plan for it and record their wishes.

The MyDecisions.org.uk free site, which guides people through different scenarios so they can record their wishes for future care and treatment, has seen the number of completed Living Wills in the last month surge 160 per cent compared to the same period last year, and completed Advance Statements are up 226 per cent.

One might therefore conclude that the coronavirus is prompting people to consider and record their wishes for the end of their lives – some for the first time – and that is to be welcomed.

These are unsettling times, but know that healthcare teams in hospitals will continue to work hard to care for our patients, whether that means supporting them to a full or partial recovery or enabling them to have a dignified death.

For those who have already taken the time to document their wishes for the end of life, I am thankful. To those who are thinking about it, I appeal to you to do so.

Complete Article HERE!