chs2020 – Page 6 – Blog Posts

Goal Setting: Using a Bullet Journal to Make it Happen in 2018

In a couple of days, we will bid a fond farewell to 2017 and open our arms to what 2018 can bring. It is that time of year when TV stations air “Year in Review” programming, and print newspapers and online news organizations typically showcase the top headlines and stories of 2017. But what about the year we had as individuals? Do you take time to reflect on the past year? Or do you only look to the future? Do you make New Year’s resolutions that fall by the wayside after a couple of weeks have passed? Here’s a suggestion: Start 2018 with simple goal setting and use a bullet journal to make it happen.

Goal Setting in a Bullet Journal

During the summer, we shared a blog post titled: “How to Start Bullet Journaling for Patients and Caregivers,” which was chock full of information about the history of bullet journaling, tips to get started, standard practices, handy supplies and where to get access to the best of the best in bullet journaling.

As a refresher, a bullet journal is a method to keep track of tasks, take notes and jot down thoughts in one convenient location. The ‘bullet’ term is derived and used to describe the technique of using quick and short descriptions (“rapid logging”) for all of the above. Picture a short-hand and visual cue to quickly categorize whatever you need to capture in order to keep life on track. And that’s a bullet journal in a nutshell.

As far as goal setting is concerned, bullet journals are a far cry from a traditional planner. You have the luxury of making it unique for you. During the course of the year, you can adapt and change what information you capture—whether days, weeks or months down the line. If you need to adapt your goals during the course of the year, all is possible with a bullet journal. Your goals are not necessarily written in stone.

Tips to Get Goal Setting Off the Ground

In order to get started goal setting for 2018, reflect back on 2017 and think about (or better still write down) the answers to the following questions:

What were my best memories?
What were my successes?
What did I do that worked?
What didn’t work for me?
How can I make 2018 better?

Ideally, you could start your 2018 bullet journal with a spread that visually captures the answers to these questions. If you need inspiration for these pages, look no further than Shelby at Little Coffee Fox. On her site, there are also valuable guides to help newbies get started, from opening that first page to assistance with lettering.

Goal Setting: Tracking What’s Meaningful

Whether you are a patient, a caregiver or a family member, the beauty of a bullet journal is that you can track what is meaningful to you—goal setting is yours and yours alone. For example, if you suffer with chronic obstructive pulmonary disease (COPD), you could set a goal of practicing pursed lip breathing and/or belly breathing on a daily basis. By making this a goal, when you have difficulty breathing, it will be easier to break the cycle of anxiety that comes when it’s hard to breathe. Or if you have congestive heart failure (CHF), your goal setting could be to monitor your weight twice daily. Watching fluctuations in weight is important to keep CHF symptoms at bay and under control.

As a caregiver of a loved one with dementia or Alzheimer’s disease, watching out for changes in mood, and keeping track of instances of restlessness and confusion often associated with Sundown Syndrome, might be important to you. You could create a mood tracker spread, or if you are so inclined, a color-coded year in pixels. Don’t have time to make your own mood tracker or year in pixel spread? No worries, as there are free (or nominal cost) spreads available for download. Just paste them directly into your bullet journal and you are ready to go.

Staying Connected to Goals

Using a bullet journal for your goals—no matter if they are simple or complex—can help keep you accountable. Daily use is best to help stay motivated and connected to those goals. Nevertheless, if you don’t quite make some of your goals, it’s okay. A good practice would be to analyze why you failed or succeeded. You can easily adapt your goals and make them more attainable and reasonable.

Goal setting can be quite valuable for hospice patients. The visualization of a future date in a bullet journal can be a priceless motivator, especially if the goal is attending a significant family event. These types of goals bring home the point that every day is precious and we should all be dedicated to making the most of life each and every day.

At Chapters Health System and its affiliates—Good Shepherd Hospice, HPH Hospice and LifePath Hospice, every day is devoted to educating our patients and keeping them in the place they call home. We are dedicated to ensuring that patients, young and old alike, and their families are able to make educated decisions about important healthcare matters. For more information, please call our helpful Chapters Health team at 1.866.204.8611 or send an email to info@chaptershealth.org.

About Phoebe Ochman

Phoebe Ochman, Director of Corporate Communications for Chapters Health System, manages all content and communications for the not-for-profit organization.

Helpful How-To Videos: Setting Up Your 2018 Bullet Journal

As bullet journaling becomes more popular every year, available resources for assistance grow in tandem, sometimes even exponentially.

If a bullet journal sounds like something you’d like to use to keep you on track in 2018, you can easily become overwhelmed if you start researching the how-to on your own. Don’t worry, we have you covered.

Best of the Best

Here are some of the best-of-the-best, easy-to-follow YouTube videos that can assist you when it comes to setting up a bullet journal (even if you are not able to begin on January 1).

Monica Guan: Uses a very minimalist approach to bullet journaling. She keeps everything simple and straightforward. Here’s her 2018 set-up video and for reference, check out her 2017 set-up video.

Amanda Rach Lee: With more than 500,000 followers to her YouTube channel, Amanda’s video can help you get started. She first began bullet journaling last year so it might be best to start with that video and then graduate to her set-up for 2018, including her lessons learned.

Seventeen: Web editor Noelle Devoe shares valuable bullet journaling tips on the magazine’s Seventeen channel.

ChristineMyLinh and MyLifeinaBullet: The pair decided to collaborate on setting up their 2018 bullet journals by using the same theme of winter lights, moon and stars. Each journal is unique to each woman and meshes with her own creativity and interpretation. Incorporating into the videos are hints on helping to easily create eye-catching lettering without knowing or being able to master calligraphy. Here is Christine’s video, and here is Cristina’s video.

Jenny Journals: Looking for future motivation and to get inspired? Look no further than Jenny’s video as she sets up her 2018 journal along with planning for the month of January. Her pages are quite unique as she incorporates watercolors into her various spreads.

As you can see if you watch any of these videos, bullet journaling can be simple or intricate. It is yours for the making. Happy goal setting, journaling and dreaming in 2018.

Advance Directives: Right to Decide (DRops of Wisdom)

Today we continue “DRops of Wisdom,” our physician blog, with Dr. Stewart W. Stein, the associate vice president of medical services for Chapters Health System. He describes the importance of advance directives and how everyone has the right to make healthcare decisions.

Advance Directives

The majority of Americans view voting for elected officials on Election Day as their right. They get to decide on the welfare of their communities, states and country. Equally important are healthcare decisions. When it comes to a person’s health and well-being, everyone has the right to decide whether to seek or refuse medical treatment. Many adults all across the United States, however, do not exercise their right to decide.

Often times, healthcare decisions are made for adults who have become incapacitated—a result of suffering a debilitating stroke, or of developing dementia—by loved ones. Family members might assume they know the individual’s wishes and make healthcare decisions that their loved ones might not have chosen were they able to do so.

How does someone make their healthcare wishes known? They can map out their wishes in the form of an advance directive. An advance directive is the overall plan of a person’s healthcare wishes, that is to say, how much or how little should be done when he or she might not be able to make decisions. Components of an advance directive can include a living will, a healthcare surrogate designation and an anatomical donation.

Despite the fact that the Federal government passed the Patient Self-Determination Act in 1990 requiring hospitals, nursing homes, home health agencies and health maintenance organizations (HMOs) to provide patients with information about healthcare decision-making rights, only about one third of Americans have completed an advance directive. According to a University of Pennsylvania study, researchers discovered that a completed living will had been prepared in only 29.3 percent of cases, and only 33.4 percent of patients had identified a healthcare surrogate. A fully executed advance directive was statistically higher in patients with chronic illnesses compared with their healthy counterparts.

The rationale behind an advance directive is to help ensure that treatment preferences are honored if someone becomes incapacitated and can no longer speak for himself or herself. An advance directive can avoid potential conflicts.

Right to Decide

It is best to make sure that healthcare decisions are in the form of a written statement, or an oral statement made when you are healthy. There are three types of advance directives, which can be executed as part of advance care or estate planning.

A living will is a statement of your wishes with regard to medical treatment in circumstances under which you can no longer express consent. It’s called a living will because it takes effect while you are still living.

A healthcare surrogate is a person designated by you to make and authorize healthcare-related decisions on your behalf. You can include specific instructions about any treatment you want or do not want, similar to what you might have expressed in a living will.

With the passing of Florida Statute 765, you can now choose an immediate healthcare surrogate while you maintain mental capacity. Your choice of a healthcare surrogate can be based on culture or life choice. You also have the right to agree to, or to refuse, any decision made by your healthcare surrogate.

An anatomical donation is a document where you indicate your wish to donate at death all or part of your body. This donation can be an organ, tissue or body, to a person in need or for healthcare training.

It is entirely your choice as to what you want to complete for an advance directive. You can complete one or all three of the previously described options.

Because we are committed to honoring our patients’ preferences for end-of-life care, Chapters Health System now offers another type of advance directive to our hospice patients: “Physician Orders for Life Sustaining Treatment” or POLST. To learn more, please click here.

If you want your wishes known, start by taking the time to have conversations with your family and physician. If you need assistance in getting the conversation started, staff at all affiliates of Chapters Health—Good Shepherd Hospice, HPH Hospice and LifePath Hospice—are available to help.

What Would You Like to Read About in Future Posts?

In “DRops of Wisdom,” we want to feature posts with subject matter that interests you. Please leave a comment or email us with your ideas.

At Chapters Health System, every day is devoted to educating our patients and keeping them in the place they call home. We are dedicated to ensuring that patients, young and old alike, and their families are able to make educated decisions about important healthcare matters. For more information, please call our helpful Chapters Health team at 1.866.204.8611 or send an email to info@chaptershealth.org.

About Stewart W. Stein, MD

As associate vice president of medical services for Chapters Health System, Dr. Stewart W. Stein’s extensive background in end-of-life care and a commitment to the delivery of exceptional hospice services are of great benefit to the patients and families.

Frequently Asked Advance Directive Questions

Am I required by Florida law to have an advance directive?

According to Florida law, there is no legal requirement to complete an advance directive. If you do not have an advance directive, healthcare decisions can be made for you by a spouse, adult child, parent, sibling, close friend or a court-appointed guardian. The person making these decisions may not be aware of your wishes. When you create and complete an advance directive, it is always best to make sure that you discuss your wishes with the person or people who would be charged in making sure that your decisions are carried out.

Do I need a lawyer to prepare my advance directive?

You do not need a lawyer to complete an advance directive. To print a sample living will document in English, click here. Para imprimir un documento de ejemplo en español, haga clic aqui. To print a sample healthcare surrogate document in English, click here. Para imprimir un documento de ejemplo en español, haga clic aqui.

Whether a written document or an oral statement, an advance directive needs to be witnessed by two people and at least one witness cannot be a spouse or a blood relative.

What should I do if I change my mind after I complete my advance directive?

If you decide to make any changes to an existing advance directive, make sure they are clearly written, signed and dated. Also, you can change an advance directive with an oral statement, or by drafting a new advance directive. If your driver’s license indicates you are an organ donor, but you have changed your mind, contact the nearest driver’s license office to cancel the donor designation. You can then have a new license issued.

What if I moved from another state, can my advance directive be used?

If you completed an advance directive in another state, it can be honored in Florida.

Once I have a completed advance directive, what do I do next?

If you have an advance directive, make sure significant people in your life know about its existence and where the documents are located. Set up a file where you can keep a copy of your advance directive (and other important paperwork). Many people keep their original documents in a safety deposit box at their bank. Another safeguard to ensure that your wishes are known is to keep a card or note in your wallet or purse, which clearly states that you have an advance directive and where it is located.

‘Tell Me Three Things’ Review

After the death of a loved one, time dutifully marches on. The person left behind—spouse, child or sibling—tries to process the accompanying grief and everyone does it differently. However, for many, the days since the death are often counted. And so for 16-year-old Jessie Holmes, as “Tell Me Three Things” opens in this fictional Young Adult novel, the number is 733 days since her mother died of ovarian cancer.

Tell Me Three Things Uplifts

Even though the book is voiced by a teenager who needs to come to terms with her mother’s death, “Tell Me Three Things” is far from a depressing read. In fact, at the end, many readers will have smiles plastered on their faces. This novel is Julie Buxbaum’s first to be penned in the Young Adult genre, but don’t be deterred by this fact. “Tell Me Three Things” reads more like a fine example of contemporary literature, including some modern-day literary trope to move the plot along.

What made Buxbaum change course and veer away from her usual wheelhouse of adult fiction? It was time to sit down and explore feelings that she had kept bottled up for more than 24 years. Like Jessie, Buxbaum lost her mother at the same age, and she also counted days, which has since morphed into counting the years. At the end of the novel, Buxbaum shared a note to readers. According to the former lawyer and graduate of Harvard Law School, she wanted to explore what it was like to lose a parent as a teenager—at that crucial period in time that is already difficult. Buxbaum did not want to write a depressing book so she wove in a theme that is much more uplifting…first love.

Contrary to what many would assume, Jessie Holmes is NOT Julie Buxbaum. “Jessie is not me—she’s so much cooler and more together than I ever was at sixteen, or even am now…But she’s a version of me, an alterna-me…” Driving both the imagined version of the author and Jessie is the supreme desire to be seen and understood, which leads to the creation of a perfect foil, the mysterious Somebody Nobody or SN.

Relocation to the West Coast

After two years, Jessie’s father unexpectedly remarries and moves the two to Los Angeles, which is light-years away from where our heroine grew up in Chicago. Enter SN, who helps Jessie navigate the landscape of the foreign land of not only a new school, but a new private school to boot.

As we walk with Jessie through the first-person account of her early days in the City of Angels, the reader is introduced to a number of supporting characters: a new sibling, her step-brother; classic high school mean girls; a dark brooding loner and potential new best friends.

Thankfully, she has SN to help her sidestep the inevitable booby traps and angst of high school. But there is a bond that ties Jessie and secret admirer SN: he has also lost a loved one, a sibling. There are days when life gets overwhelming for Jessie, and they become what she describes as really bad days. “My eyes fill with tears, though I fight them. I’m not sure why I feel like crying. Suddenly, everything feels irrevocably broken in that way it can in the middle of the night when you are alone. In that way it can when you are watching your father comfort his new wife. In that way it can when you too are hurting but there’s no one there to comfort you.”

Until SN enters her life, Jessie has kept her emotions and grief in check. What she shares is relatable for young and old alike. “But I still haven’t found the words to talk about my mom. The real her. To remember who she was in a way that doesn’t make me keel over.”

Experience over Things

“Tell Me Three Things” teaches some valuable lessons about life, death and love. The reader witnesses Jessie’s coming of age as she realizes that even though her mom has died, her essence still lives on. Her mom loved her unconditionally, which she will always cherish and keep close to her heart. Jessie realizes how fortunate she was that she was “loved in a way that not everyone gets to love their mom. Loved my mom because she was cool and interesting and warm and listened to me and continued to make me pancakes in the shape of my initials because somehow, even though I didn’t, she always understood that I’d never be too old for that sort of thing.”

Like many of us who have lost a loved one, Jessie voices the one regret she has learned to come to terms with in the end, “She will never see who I grew up to be—that great mystery of who I am and who I am meant to be—finally asked and answered.”

At Chapters Health System and its affiliates—Good Shepherd Hospice, HPH Hospice and LifePath Hospice, every day is devoted to educating our patients and keeping them in the place they call home. We are dedicated to ensuring that patients, young and old alike, and their families are able to make educated decisions about important healthcare matters. For more information, please call our helpful Chapters Health team at 1.866.204.8611 or send an email to info@chaptershealth.org.

About Phoebe Ochman

Phoebe Ochman, Director of Corporate Communications for Chapters Health System, manages all content and communications for the not-for-profit organization.

Trends in Books: BookCrossing

The last trend in books that was shared in this space was the Little Free Library phenomenon and this time around we are tackling, BookCrossing.

What is BookCrossing?

Have you ever left a book behind by mistake at a coffee shop or your doctor’s office? Or perhaps you found an abandoned book at an airport gate? If either scenario rings a bell, you might have wondered what happened to your book or the story behind the book you found. Well BookCrossing solves both dilemmas.

The definition of BookCrossing is “the act of releasing books into the wild for a stranger to find or via a controlled release to another BookCrossing member.” After the release of said book, BookCrossing members/participants can track the travels of the book around the world via journal entries. BookCrossing books are identified by a sticker strategically placed on the inside cover.

Today there are more than 1.8 million BookCrossing members all over the world!

How Do You Become a BookCrossing Member?

Becoming a BookCrossing member is easy, FREE and only takes less than a minute. All you need to sign up is an email address and then you are prompted to create a password. That’s it.

Once you look through your book shelves and identify a book or two to set free, register it and you will be assigned a unique number or BookCrossing IDentification (BCID) number. This number will allow you to track the book on its journey, well, that is if the person discovering your BookCrossing book joins in the fun and journals that your book has been found out in the wild. (Unfortunately, to date, only 15 to 20 percent of BookCrossing books will receive a journal entry.)

How Do You Release a BookCrossing Book?

Once you have a BCID number for the book destined to take a trip, the next step is to label it. You can create your own labels, buy them directly from BookCrossing or even handwrite a note inside the front cover.

The following are some hints to make a BookCrossing release successful:

Make sure the finder knows the book was left behind on purpose. When releasing a book into the wild, the last thing you want to happen is for someone to think your book was lost. It is a good idea to let the finder know that the book can be taken home—it is his or her book to read.
Leave at locations where the book is likely to be discovered. The following are some of the best places to release your book: coffee shop, museum, subway car, waiting room, park bench, public garden and near a statue. If you decide to leave your book outside in the elements, make sure the BookCrossing release is protected in a Ziploc bag.
Make it easy for the finder to log the journal entry. In addition to the sticker on the inside cover, use a Sharpie on the bottom edge of the book to write down the BCID number and the website address.

So if you have books that you loved, why not share them and let them take a journey to who knows where!

Hospice Around the World: Different Cultures, Different Views

Big Ben, Victoria Peak, Gyeongbokgung Palace and Neuschwanstein Castle (aka Crazy Ludwig’s Castle) are all famous landmarks that people envision when thinking about the United Kingdom, Hong Kong, South Korea and Germany. But if you were asked to describe how these places across the globe cared for people faced with advancing age or life-limiting illnesses, would you be up for the task? The manner in which countries tackle this type of care vary widely, so today we are taking an in-depth look at hospice around the world.

What is Common About Hospice Around the World?

There is one commonality about hospice around the world: Hospice is synonymous with serious illness and end-of-life care. The differences become apparent when you look at how different cultures view this type of care and whether it is embraced in the country of origin.

Hospice in the United Kingdom

Today’s hospice has its origin in the United Kingdom (UK) due to a free-thinking, trailblazer by the name of Dame Cicely Saunders. In the 1950s, after recognizing the importance of psychosocial and spiritual needs being met during the dying process, Dame Saunders fought diligently for the rights of those faced with life-limiting illnesses because she realized that managing pain was not enough. In order to accomplish her goals, she returned to school to acquire degrees in both medicine and social work.

A decade later, in 1967, Dame Saunders realized a dream when St. Christopher’s Hospice opened in London. Two years later, she established the first home team to care for patients out in the community. Although the first hospice in the UK was founded by a Christian organization, today’s hospice is secular. In fact, the UK has more than 200 hospices with care provided by the National Health Service without charge to all permanent residents of the country.

Here are some additional facts about hospice in the UK:

Approximately 200,000 people living in the UK receive hospice care for life-limiting illnesses
More than 40,000 residents of the UK receive bereavement support from hospice
More than 125,000 individuals volunteer with hospice every year
Thirty-two percent of individuals receiving care in an inpatient facility returned home

Hospice in Hong Kong

A generation ago, Hong Kong embraced hospice care, and most people died in the comfort of their own homes or in a community setting. However, today in Hong Kong, a different picture must be painted. More than 94 percent of people die in Hong Kong’s public or private hospitals.

Why has this shift occurred? Apparently healthcare providers, as well as patient and families, do not believe that there are many options available for end-of-life care in Hong Kong anymore. There is also a shortage of facilities that can provide comfort measures during a patient’s final days.

For more than 30 years, the Society for the Promotion of Hospice Care has advocated for end-of-life care. This not-for-profit organization is guided by the following principle: “When days cannot be added to life, add life to days.”

Fortunately, due to a governmental land grant and funded by the Hong Kong Jockey Club Charities Trust, the Society for the Promotion of Hospice Care was able to build and open its Jockey Club Home for Hospice (JCHH). With the opening of this 30-bed facility at the end of September 2017, the organization envisions a return back to a multidisciplinary healthcare model that supports comfort at the end of life. The society also provides 24-hour support services to more than 1,000 patients each year, and caregivers can attend its training programs. At the very least, the organization hopes there will be an open dialogue to provide these much-needed services once again across all Hong Kong districts.

Understanding Hospice in South Korea

Since 1963, hospice care in South Korea was only available through religious organizations such as the Gabari Catholic Organization. It has only been in recent years that hospice and palliative care were introduced into the country’s healthcare system because this type of service was not considered “medical” by the public. But a shift in understanding is being introduced into the culture.

In February 2018 (along with the opening ceremony of the Winter Olympics), a law will go into effect in South Korea whereby any adult over the age of 19 who has a serious illness with a life expectancy of six months or less can refuse medical treatment that could potentially extend their lives. Up until now, Koreans were not able to forego possible life-saving treatment, such as cardiopulmonary resuscitation, chemotherapy and dialysis, but instead endured this type of care until death. Koreans wanted hospice care but needed legal protection for this decision to be carried out.

The law known as the Well-Dying Act or Health Care Decision Act will require that a patient faced with an end-of-life decision have his or her physician or healthcare provider verify the terminal diagnosis. The patient must also state on Ministry of Health and Welfare medical forms that they do not want medical care, which are then registered as legal documents. And now with the law backing their decision, patients will be able to live out their days with comfort and dignity.

About Phoebe Ochman

Phoebe Ochman, Director of Corporate Communications for Chapters Health System, manages all content and communications for the not-for-profit organization.

Bringing About End-of-Life Change in Germany

Six years ago, Eugen Brysch, chief executive officer of the German Hospice Foundation, traveled to the United States with a goal for his trip─to gather information about senior communities. Some of his other objectives were to visit medical facilities and observe how Americans implemented end-of-life care. At the time, he met with LifePath Hospice staff and toured the Sun City Center Hospice House. Brysch saw firsthand how senior lifestyle communities integrate with medical providers. In Germany, these types of senior-exclusive mini-villages did not exist.

“On that trip, I gained insight on how well medical professionals interact with members of the senior community, many who volunteer as a way to stay active,” said Brysch. “In addition, I wanted to learn how we might be able to improve hospice care in Germany.”

Fast forward to fall 2017 when Brysch took another trip across the Atlantic Ocean on behalf of his renamed not-for-profit organization, The German Foundation for Patient Rights. With more than 55,000 donor members, the organization’s mission is to protect patient rights and support people in need of care, specifically those with dementia and terminal illnesses. The foundation acts as a representative for patients and their relatives interacting with insurance companies, physicians, hospitals and nursing homes.

During this journey to the United States, Brysch wanted to learn more about the integration of palliative care for aging adults. After touring the Melech Hospice House, he educated staff about the current situation in Germany.

In 2015, the German Federal Parliament passed a law to strengthen hospice and palliative care in Germany. Important improvements were made in palliative care, specifically with regard to hospitals and hospices. “Unfortunately, nursing home residents do not receive the same level of palliative care. Our foundation lobbied the government on behalf of these patients as they should have the same legal right to hospice care where they live—nursing homes,” shared Brysch.

Germans are forbidden to move from a nursing home to hospice, and unfortunately, palliative care in nursing homes is not on the same level as in hospice. The German Foundation for Patient Rights is committed to putting a stop to what they consider this “second class dying” in nursing homes. With its advocacy efforts, the foundation is once again determined to improve healthcare for those suffering from life-limiting illnesses.

Benefits of Grief Support

When the death of a treasured member of a family or dear friend occurs, it can be devastating to those left behind. As no two people are exactly the same, the same holds true with regard to working through grief. Every one grieves in their own manner, and there is no right or wrong way to grieve. Knowing that there are experts in grief and bereavement to guide people through this difficult time in their life helps. The benefits of grief support are numerous.

What Are the Benefits of Grief Support?

First and foremost, the time following death is very important and should never be rushed. Emotions can make people feel as though they are a ball being flipped to and fro in a pinball machine. Sadness and crying can occur in one person, yet another family member can experience a sense of relief. These emotions are normal and no one should ever feel guilty for experiencing them. That’s where grief support can help.

Regardless of whether a loved one was a hospice patient, adults and children can find support from Chapters Health System grieve in healthy ways. Grieving a death is difficult at any age. After the death of a loved one, the bereavement staff members at any of the Chapters Health affiliates—Good Shepherd Hospice, HPH Hospice and LifePath Hospice—are there because grieving a death is hard at any age. Grief support is available whenever families feel ready and for as long as they want.

“The families we see most often are in crisis,” said Allyson Moskowitz, Chapters Health Director of Social Services, Bereavement and Volunteer Services. “They’ve had no time to prepare as they might for a death that was anticipated. But actually, no family can ever prepare for the loss of someone they love. They need to talk to others who understand what they’re going through.”

Bereavement staff keep in touch through visits and phone calls to help guide the grief-stricken through this difficult time if so desired. Also available are grief support groups at no cost to any family member or friend who is grieving.

“Grief support is a huge way that Chapters Health gives back to our community, because our grief programs—for adults and children—aren’t limited to those whose loved one was a hospice patient,” added Ms. Moskowitz. “In each of our communities, we are recognized and embraced as ‘The Grief Experts.’ We hire masters-prepared clinicians in our grief support programs. We have clinical social workers and clinical mental health counselors who guide our volunteers.”

Tips to Help Cope with Loss

Grief is not one size fits all. However, there are tips that can help people cope with loss.

Like a rollercoaster, healing has ups and downs. Understand that there will be high points and low points. There will be leaps forward when positive experiences return, but sometimes depression can take a person back a couple of steps in the blink of an eye.
Seek comfort. Accept grief support from others and seek out if the need arises. It is human to do so.
Everyone heals at his or her own pace. Don’t compare the duration of grief to someone else.
Don’t be afraid to cry. Crying is therapeutic and a cleansing release.
Keep a journal. Putting thoughts down on paper is a good way to release feelings and let them out. Years from now, picking up the journal and reading it back will show just how far someone has come.

Kids Grieve Too

Across the affiliates of Chapters Health, grief support is not just for adults. Children may express grief in a similar way to adults. However, their sadness can be conveyed in ways that might not be easily recognized by their parents, loved ones, friends or teachers. That’s why we offer assistance to provide grief support for children too.

Specially trained counselors can guide a child through grief, loss or fear after the death of a loved one. However, what works best for children is receiving grief support before the death even occurs. When counseling happens proactively, children are better prepared to deal with their emotions, thoughts or reactions. Similarly, parents and other family members play an important role in the ability of children to express their grief constructively.

Grieving Children in the Community

Whether the loss is expected or unexpected, grief support is available to children in the community. After a death, counselors meet with children and, when needed, their families to make sure that the child receives the most appropriate support. Children under the age of 18 living in Polk, Highlands and Hardee counties are eligible for grief support with Good Shepherd Hospice. In Pasco, Hernando and Citrus counties, HPH Hospice provides these services for children and LifePath Hospice does so in Hillsborough County.

About Phoebe Ochman

Phoebe Ochman, Director of Corporate Communications for Chapters Health System, manages all content and communications for the not-for-profit organization.

Annual Weekend Grief Camp for Children

When you think of camp, what do you picture in your imagination? Do you conjure up campers circling a campfire roasting marshmallows? Or do you imagine playing traditional camp games like tug-of war or being divided up into groups for color war activities? The annual weekend camps that all Chapters Health affiliates hold offer children fun camp activities while learning to express and cope with grief and loss. Good Shepherd Hospice hosts Camp Brave Heart at Circle F. Dude Ranch in Lake Wales, and at the Lakewood Retreat Center in Brooksville, HPH Hospice holds Camp REACH OUT and LifePath Hospice runs Camp Circle of Love.

While children participate in conventional camp experiences like swimming, arts and crafts and team sports, emphasis is placed on developing and building trust, coping skills and managing grief. Campers benefit from meeting others their age who experienced a death and often, this helps them feel less alone. Camp Brave Heart, Camp REACH OUT and Camp Circle of Love are all weekend-long events for children ages 6 to 17.

The following are the dates for the 2018 camps:

Friday, March 2 through Sunday, March 4, 2018: HPH Hospice hosts Camp REACH OUT at the Lakewood Retreat Center in Brooksville.

Friday, March 23 through Sunday, March 25, 2018: LifePath Hospice hosts Camp Circle of Love at the Lakewood Retreat Center in Brooksville.

Friday, April 6 through Sunday, April 8, 2018: Good Shepherd Hospice hosts Camp Brave Heart at the Circle F. Dude Ranch in Lake Wales.

To learn more about Camp Brave Heart, the Bethany Center and the grief support provided by Good Shepherd Hospice to residents in Polk, Highlands and Hardee counties and other services, please call our helpful Good Shepherd Hospice team at either 863.968.1707 or toll-free at 1.800.464.3994 or send an email to info@chaptershealth.org.

To learn more about Camp REACH OUT, the HPH Hospice Center for Grieving Children and the grief support provided by HPH Hospice to residents in Pasco, Hernando and Citrus counties and other services, please contact the HPH Hospice Bereavement Department toll-free at 1.855.465.8238 or send an email to info@chaptershealth.org.

To learn more about Camp Circle of Love, the Circle of Love Centerand the grief support provided by LifePath Hospice to residents in Hillsborough County and other services, please call our helpful LifePath Hospice team at either 813.877.2200 or toll-free at 1.800.209.2200 or send an email to info@chaptershealth.org.

Role of Attending Physician in Hospice

Today we continue “DRops of Wisdom,” our physician blog, with Dr. Andrea Miller, the medical director for Good Shepherd Hospice, an affiliate of Chapters Health System. She describes the role of the community attending physician for patients who can benefit from hospice.

In Hospice, What’s the Role of the Community Attending Physician?

When I am out in the community talking to physicians, there are many who have patients who would benefit from the care, comfort and understanding that go hand in hand with hospice care. There seems to be a common misconception among these doctors. They are under the impression that if their patients are admitted to hospice they will not be kept in the loop and provided with care updates. This is simply not true.

At all affiliates of Chapters Health—Good Shepherd Hospice, HPH Hospice and LifePath Hospice, the hospice team works closely with community attending physicians to develop, review and update the patient’s plan of care. All attending physicians are kept informed of their patients’ condition and are alerted if there are any changes. On a regular basis, we also provide attending physicians with summaries after interdisciplinary team meetings.

What Should Community Physicians Do?

If a community physician has a patient who could benefit from end-of-life care, the first step would be to have a conversation with the patient and his/her family. We recognize that these conversations might not be easy and we can help facilitate the discussion with patients and their loved ones.

Although many hospice patients do have cancer, we serve terminally ill patients of all ages, with all types of progressive and chronic diseases. If hospice care is accessed early, there are many benefits. Some of these benefits are:

Pain and symptom management reduces unnecessary hospitalizations and ER visits;
Medications, durable medical equipment and supplies are provided, which decreases the financial burden on patients and families;
Education and support reduces the stress on family and caregivers; and
24/7/365 access to care and the ability to benefit from psychosocial, volunteer and bereavement services.

In fact, many of our patients are able to enjoy life as much as they did before their diagnoses. Patients receive services for as long as they are appropriate and required, or in some cases when they choose to stop and thus revoke care.

Following Medicare Hospice Benefit regulations and rules, in order for any of the Chapters Health affiliates to provide care for patients, the community physician must certify that, based on his or her clinical expertise, the patient has a prognosis of six months or less given the diagnosis. It is important for patients to understand and know that their physician—if chosen as the attending physician—will continue to see and care for them if that is what they desire. However, the patient’s physician can refer him or her to hospice, but does not necessarily need to be the attending physician. And if the patient does not have a primary care physician, a referral can be made by the family with a hospice consultation still taking place.

When patients are admitting to hospice, they are asked to designate an attending physician. According to the Medicare Hospice Benefit, the attending physician is defined as “the individual having the most significant role in the determination of the patient’s medical care.” The patient has the right to keep his or her community physician or Advanced Registered Nurse Practitioner (ARNP) as the attending physician. Another option for the patient is choosing an individual with Chapters Health Medical Services.

As per these Medicare guidelines, the community attending physician decides how involved he or she would like to be with regard to the patient’s care. Additionally, the attending physician can choose to be notified for all orders or opt to place the responsibility for pain and symptom management with a Chapters Health hospice physician. It is important to know that if a patient designates a community attending physician that individual can continue to bill Medicare Part B for professional services such as office visits.

We are always available to speak with community physicians, patients and families about any questions they might have about hospice and palliative care.

What Would You Like to Read about in Future Posts?

In “DRops of Wisdom,” we want to feature posts with subject matter that interests you. Please leave a comment or email us with your ideas.

Andrea Miller, MD

As the medical director at Good Shepherd Hospice, Andrea Miller, MD, is a local resource for area hospitals seeking to educate staff on issues surrounding chronic conditions, palliative care and hospice programs.

Prior to joining Good Shepherd Hospice, Dr. Miller was a primary care physician with Brevard Health Alliance in Melbourne, Florida, and served as the medical director for Christian Care Ministry. Additionally, she has been a medical director since 2002; first with Barton Hospice in Lake Tahoe, California and then with Wuesthoff Health System Brevard Hospice and Palliative Care in Melbourne.

Dr. Miller earned her Bachelor of Arts in Chemistry from the State University of New York (SUNY) at Buffalo, New York; her medical degree from SUNY Upstate Medical University in Syracuse, New York; and completed her family practice residency at Saint Vincent Health System in Erie, Pennsylvania. She is certified in Hospice and Palliative Medicine.

‘End of Your Life Book Club’ Review

When Mary Anne Schwalbe received her terminal pancreatic cancer diagnosis, it shouldn’t have come as a surprise to her family that her coping mechanism would be reading. Throughout her life, whenever she was sad, confused or out of sorts, Mary Anne would seek solace within the pages of a good (sometimes bad) book. As her son Will wrote in “The End of Your Life Book Club,” for his mother, “Books focused her mind, calmed her, took her outside of herself.”

Birth of “The End of Your Life Book Club”

Described and slated as a memoir, “The End of Your Life Book Club” is truly more of a biography of Mary Anne’s life. The book begins in the waiting room at Memorial Sloane-Kettering’s outpatient care center. Will accompanies Mary Anne to her chemotherapy appointments in order to keep her company and spend as much time as possible with her. Mother and son, both avid readers, often shared books and compared notes about their thoughts and feelings. And so the two-member book club is born.

Each chapter of this book is titled with a book selection. Books were a common bond, but they also served as a distraction from the reason why they were sitting in the waiting room. He notes in the fourth chapter, “Marjorie Morningstar,” the following: “That’s one of the things that books do. They help us talk. But they also give us something we all can talk about when we don’t want to talk about ourselves.”

While the author touches on various aspects of the selection—novel, play, book of poetry, short stories—and the ensuing discussion with his mother, he deftly weaves in glimpses of the family and their lives over the years. Oftentimes mid-chapter, mother and son play the “remember when” game. For instance, the reader learns how Will and his brother would use an engrossing read to shirk chores that weren’t to their liking. The key was looking and being completely immersed in a book, as just flipping pages didn’t count to get them out of the task at hand.

Seeking Palliative Relief

As time marches on in the book, the reader begins to see more and more how Mary Anne is affected by her illness. She manages to soldier on by setting goals for herself—what family events she wants to be around to attend.

Mary Anne has a wonderful and caring physician who guides her with understanding and wisdom throughout her end-of-life journey. Dr. O’Reilly and Mary Anne are on the same page for the primary goal of making life worth living, which also means alleviating pain. This is where the two differ. More often than not, Mary Anne is not truthful about her pain level. In fact, she refuses to even use the word “pain” and instead will only admit to “discomfort.”

It isn’t until Thanksgiving, two months after her diagnosis, when Will’s mom admits she isn’t doing well and will not make it for dinner. Nevertheless, Mary Anne is always thankful for her “good days,” and invariably finds the “not-so-good days” frustrating.

Throughout the book, there are times when life and the literary work of art meld into one. For example, when the mother and son are reading “Gilead,” they discuss one of Mary Anne’s favorite lines that poses an important question, and she now sees it in a new light. The question appears within the following passage: “When you encounter another person, when you have dealings with anyone at all, it is as if a question is being put to you. So you must think, what is the Lord asking of me in this moment, in this situation?”

In the past, Mary Anne would keep this question in mind when she met new people in her professional life (primarily at Harvard University as the dean of admissions and financial aid, and as the founding director at the Women’s Commission for Refugee Women and Children), but now she contemplates the answer with a different mindset. As she comes in contact with other patients, nurses and doctors, it helps Mary Anne conclude that the answer is different for each person and each situation. Additionally, it makes her remember that people aren’t here for just her—everyone is here for one another.

End-of-Life Wishes

Will recounts how the family was fortunate as both Mary Anne and her husband, Douglas, were well-versed and educated about the hospice movement and its palliative benefits. The couple’s wishes were known and documented well in advance of Mary Anne’s cancer diagnosis. Will and his brother and sister know their parents have completed Do Not Resuscitate orders and living wills. Figuratively speaking, the siblings will not have to squabble over what the elder Schwalbes want when the time comes.

Mary Anne and Douglas know there would be no heroic efforts to save their lives, and they emphatically want to die at home. With the picture of how they want to die in their minds, it is easier for everyone to discuss dying, death and what needs to (or not) be done. For her family, as the end draws near, Mary Anne’s philosophy about her terminal diagnosis makes it easier on those loved ones left behind. Hospice care is brought in to help meet her needs.

Will makes a point of describing how hospice care differs from his mom’s prior healthcare. After greeting the family upon arrival, shortly thereafter his mom’s hospice nurse directs all conversation to Mary Anne and takes his mom’s hands in her own. In the past, other healthcare providers would speak to the family and not his mother (even when she was there), and most assuredly avoid touching her.

Mary Anne definitely makes the point that she is “living while dying and that whatever time she had left was not to be turned into a rolling memorial.” Mary Anne’s family is grateful and blessed for having such a wonderful wife, mother, mother-in-law and grandmother in their lives. And for the rest of the world, Mary Anne is a unique champion of the forgotten, mentor and friend.

Mary Anne knew what she wanted her ending to be (and it will come as no surprise that she had a penchant for always reading endings first). Even though the End of Your Life Book Club was primarily composed of two members, we’re all in the book club whether we acknowledge and accept it as such. Mary Anne knew that. Every book we read could be our last (there were 174 books read and discussed by Will and his mother). We should cherish every moment as we make the most of life.

About Phoebe Ochman

Phoebe Ochman, Director of Corporate Communications for Chapters Health System, manages all content and communications for the not-for-profit organization.

Trends in Books: Little Free Library

In 2009, at the end of his driveway in Hudson, Wisconsin, Todd Bol set up the very first little free library. He never realized that this simple concept would morph into the worldwide phenomenon that it is today. Currently, there are more than 60,000 registered little free library book exchanges in all 50 states and 80 countries around the world.

What is a Little Free Library?

A little free library is exactly what it sounds like—a small and free place to either take a book, leave a book or both. They can be as low-tech as a plain weatherproof box to ornate works of art (castles, bed and breakfast replicas, cars, etc.) You can purchase kits from the non-profit Little Free Library organization or do-it yourself.

Little free libraries can be located anywhere. If you would like your library registered with the ability for the location to be discovered on an online map, you just need to register it with Little Free Library. Once the registration is completed, you will receive a small sign that you can put up on your library saying “Take a Book, Leave a Book.”

These newfangled libraries tend to pop up in various communities: neighborhoods to parks to even nearby places of worship and businesses. The goal is to encourage a love of reading while at the same time build community bonds and increase access to books for all reading backgrounds and ages.

Is the Lofty Goal of the Little Free Library Successful?

According to a recent Little Free Library survey:

74 percent of people shared that they read a book they wouldn’t normally read were it not for a Little Free Library in their neighborhood;
73 percent of those surveyed met more neighbors because of the exchange; and
92 percent of people said their neighborhood now feels friendly because of their little free library.

Tips for Overcoming Holiday Grief

Shortly after Halloween ends, stores swap out their decorative inventory for Thanksgiving and the winter holidays. Everywhere you turn, you see festive table decorations, lighted trees, menorahs and New Year’s party hats. It is a joyful time for most. However, it can be troublesome and filled with grief when you have recently lost a loved one. That’s why it is extremely important to understand how to cope during the holidays. So today on the blog we are sharing holiday grief tips.

Understanding Grief in Today’s Society

There’s a saying that explains why grief can be so difficult: “As much as you love, it’s as hard to heal.” Grief is an internal process. There isn’t a cookie-cutter approach to handling grief, and invariably it will be different for different people—even within a family.

In the past, many people wore black for a year to let the world know they were in mourning. It was the very public display of alerting family, friends and co-workers that you might avoid society for a time to mourn your loss. Today this practice has fallen by the wayside.

After the death of a family member or friend, we are forced back into our daily routine all too quickly. “Normal life” is supposed to resume even if we are still in mourning. Society wants us to move forward, and often sooner than we might be ready.

Grief can affect every aspect of our life. It can be difficult to:

Feel joy from those activities that you previously enjoyed (called anhedonia)
Sleep, which in turn can compromise your health
Remember simple tasks
Socialize and so you shy away from friends
Pray as you start to question your spirituality
Let yourself cry

It is totally natural to flip flop across an array of emotions. It can even be cyclical and change depending on what phase you are in your life. Nevertheless, we all have a natural ability to heal our psyche.

Holiday Grief Tips

Grief, especially holiday grief, is like an elephant in the room.

If you recently lost a loved one, recognize that the holidays are going to be different and that’s okay. In time, you will learn how to embrace the change—it just takes patience and understanding.

Whatever upcoming holiday you celebrate, there is a good chance it might be more difficult than you expected to cope and get through the season.

Here are some holiday grief tips that can help.

Communication: Like with almost every aspect of life, communication is important. If you are feeling guilty about not having the holiday spirit and possibility letting others down, share your thoughts. Your feelings are yours and yours alone. If there is disagreement in the house and within your family about the holidays, talk and be honest. Discuss what you’d like to do and what will be too difficult. Compromise goes hand in hand with communication.

Holiday decoration: When the holidays roll around, there are numerous decisions to make, especially when it comes to decorating. Do what is right and good for you. It is your option whether you decorate like you have in the past or scale it back this holiday season.

Attending holiday parties: Keep in mind that it is entirely up to you whether you attend a holiday party. If you decide to attend, talk to the host before the party so you can find out if there’s a place you can go should you need to take a moment for yourself. Additionally, try driving yourself to the party. This way, if you need to leave early, you are not depending on another individual. You can leave when you’ve had enough holiday cheer.

Holiday cards: If in years gone by you’ve sent out Christmas cards or a letter, rethink how you tackle the task this year. Maybe go a different route and send a holiday group email. Or perhaps it might be easier to post a message on social media for family and friends. On the other hand, if you can handle a letter, go for it. There is no right or wrong way, and nothing is written in stone.

Gift giving: In the past, gift selection and giving was rewarding and something you always looked forward to, even if it meant battling Black Friday crowds. But what if this year you can’t face leaving the house to go shopping? Solution: You can always shop online or grab gift cards for the recipients on your list.

Holiday food preparation: Food preparation during the holidays can be a landmine of emotions, especially with the loss of the family matriarch. If this sounds familiar, try splitting the cooking and baking responsibilities.

Healthy habits: If you are battling grief, you need to take care of yourself. Granted it might be a struggle just to get out of bed, but try. Around the holidays, take a walk and get out in the sunshine for some fresh air. With the multitude of holiday food indulgences available around every corner, try to eat and make healthy food choices as much as possible.

Hydrate: Grief can leave you dehydrated whether you shed tears or not. When a person becomes dehydrated, short-term memory can be affected adversely. So drink plenty of water.

Start a journal: Writing your emotions can help you process what is going on inside your head. Journaling is ongoing support for you—paper or computer—it’s your way to express yourself.

Permission to be sad: During the holidays, it is okay to give yourself permission to be sad. The same holds true for kids. Allow yourself the opportunity to grieve and cry. On the flip side, if something makes you happy or laugh, go for it.

Over the years and during future holiday seasons, you will probably experience grief bursts, which can be triggered by a million different things: It could be a song, smell, photo or memory. It’s a reminder to us all that we’re human, and we remember the deep bond and love of our lost loved one with our entire being.

Across Chapters Health System affiliates—Good Shepherd Hospice, HPH Hospice and LifePath Hospice, there are holiday memorial events that allow attendees to remember loved ones in special ways. Good Shepherd Hospice hosts Lights of Remembrance, please click here for more details. LifePath Hospice hosts Light Up a Life, please click here for more details. For more than 20 years, HPH Hospice has maintained a tradition of remembrance and comfort during the holidays. Through the display of memorial ornaments placed on trees in Pasco, Hernando and Citrus counties, it is a special way to remember loved ones. For more information, please click here.

About Phoebe Ochman

Phoebe Ochman, Director of Corporate Communications for Chapters Health System, manages all content and communications for the not-for-profit organization.

Starting New Holiday Traditions

Do you have a family tradition of writing down why you are thankful on Thanksgiving? Perhaps every year on the last night of Hanukkah, the kids gather around the menorah to take a picture lit only by the glow of the candles? Or maybe for the past 20 years, every family member had to attend Christmas dinner in an ugly holiday sweater? No matter what your religion or cultural background, family holiday traditions can be simple or complex.

If this is your first holiday since the death of your loved one, you don’t have to stick to old family traditions. This season feel free to give yourself permission to change it up. Nothing prevents you from going back to the tried-and-true tradition when you (and the family) are ready.

If the family lost a parent, try making something special with the kids. Give them choices and get them involved. Children are flexible and can adapt to change, sometimes more readily than adults.

When we think of grief, the conjured image is often dark. Therefore, try adding color throughout the house, even in unexpected ways. Instead of candy and chocolate, keep a bowl of fruit on the kitchen counter. When you walk by the bowl, reach for brightly colored fruit rather than an unhealthy food choice like potato chips.

Holidays are also a good time to memorialize and remember a lost loved one. Light a candle. Put out a place setting for the person who is gone. Plant a tree. Create a butterfly garden. Donate to a cause that meant something to your lost loved one. Do whatever makes you and your family feel better during the holidays.

The Keys to Pain Management for Hospice Patients

Think about the last time you were in pain. Maybe you picked up a sheet of paper and gave yourself a deep paper cut. Perhaps you slipped in the shower and broke your hip. Or possibly you experienced severe pain passing a kidney stone. But what if you had an advanced illness—such as cancer? Can you comprehend the level of pain you would experience, especially if the cancer had metastasized to your bones? Few of us can truly understand this type of pain. That’s why it is extremely important to understand the keys to pain management for hospice patients, no matter what their diagnosis.

Focusing on Pain Management for Hospice Patients

If you had to name the most common symptom reported by hospice patients, what would you say? If you said pain, you are correct. According to studies published in Global Atlas of Palliative Care at the End of Life and the British Medical Journal, pain is one of the most common and distressing symptoms at the end of life. It also leads many people to seek hospice services.

Based on a proven model for clinical care, it is always important to educate and support patients and caregivers. This is especially true when it comes to pain management for hospice patients.

“In 2016, Chapters Health System launched the multi-phase Pain Management Initiative designed to improve our ability to bring every patient’s pain under control within the first four days after admission and keep the pain under control throughout the course of the patient’s hospice journey,” stated Pam Saucier, RN, BSN, MBA, Chief Compliance and Clinical Officer at Chapters Health.

Hospices use a scale by which patients (or their caregivers, if patients cannot speak for themselves) rate their pain on a scale of 1 (the lowest) to 10 (the highest). If a hospice patient has a pain score of 7 or greater, the situation is considered a hospice emergency. With a focus on pain management for hospice patients, the clinical team constantly monitors patients’ pain scores with a goal of getting their pain level to a 5 or less by the fourth day after admission to any of the Chapters Health affiliates—Good Shepherd Hospice, HPH Hospice and LifePath Hospice.

Pain Management Initiative Explained

The Pain Management Initiative started with an intensive re-education program for staff on pain assessment, pain documentation, and plans and procedures for getting patient pain under control and keeping it that way. Next up, a multidisciplinary team of experts developed a pain protocol whereby patient pain is assessed on every visit by a member of the hospice care team. Any patient who reports a pain score of 7 or greater appears on a twice-daily report. Patients who show up on the pain report receive regular follow-up contact, including phone calls and repeated visits by a nurse—whatever it takes to manage the pain.

Chapters Health physicians and advanced registered nurse practitioners are always available to assess patients in person and adjust medications. Additionally, Chapters Health clinical pharmacists are available 24/7 to review and dispense medication orders.

It takes a balance of the appropriate doses and the proper medications to achieve a level of comfort to help manage hospice patients’ pain.

“It’s an area of expertise,” added Saucier. “This is something we promise our patients we’ll manage effectively. It’s important to our patients. And it’s just as important for caregivers at the bedside and our nurses.”

About Phoebe Ochman

Phoebe Ochman, Director of Corporate Communications for Chapters Health System, manages all content and communications for the not-for-profit organization.

Pain Comes in All Shapes and Sizes

For the most part, thinking about end-of-life pain conjures up an image of a patient with cancer, especially pancreatic or prostate cancer with metastatic bone disease. However, pain is also a common symptom for non-cancerous and life-limiting illnesses, such as chronic obstructive pulmonary disease (COPD) and end-stage congestive heart failure (CHF). Additionally, pain in chronic illnesses may be related to diseases or side effects of treatment, which are similar to patients with cancer.

There have been studies that demonstrated the pain people experience as cancer patients is different than others with non-cancer diagnoses. Publishing their results in Drugs Aging, Prommer and Ficek from the Mayo Clinic confirmed this theory. A Norwegian research group went a step further in its analysis. The group found patients with non-cancer illnesses had a higher prevalence of mild to moderate pain, while advanced cancer patients were more likely to experience a greater intensity of pain, which was described as severe to excruciating.

Oftentimes, family members/caregivers are called upon to play an active role in the pain management of hospice patients. Not only do they give the medication, but they are also tasked with describing the pain to hospice staff. This observation prompted Campbell and her associates at the University of Virginia to delve into even more detail about the pain management of hospice patients and whether there was a difference in outcome for those with cancer versus non-cancer.

The group specifically looked at pain scores at two points in time, prescribed medications and the percentage of patients in each group who were able to report on their pain intensity. In June 2017, they published the results of their study in Nursing and Health Science. The group concluded that it is important to actively involve patients’ caregivers in medication administration along with educating them properly on the safe use of all medication, regardless of drug type. It is also helpful to cue caregivers to understand non-verbal pain indicators and to help better manage intensity and keep hospice patients more comfortable.

Palliative Care Physician Shares Post-Hurricane Reflections

The approach of a major hurricane creates a pervasive sense of anxiety and urgency to secure one’s home and seek safe shelter. In the days leading up to Hurricane Irma making landfall in Florida, it seemed that empty store shelves and long lines at gas stations happened overnight. As the Medical Director for Chapters Health Palliative Care, I had not expected that palliative care would play any significantly different role during the storm, other than that which we play every day on our busy inpatient consult service (our team averages 120+ new patient consults and nearly 400 follow-up visits monthly). Yet I found my specialty skills well-utilized during the recent hurricane in Florida.

Palliative Care during the Storm

With Hurricane Irma about to make landfall, our primary clinical site, Florida Hospital Tampa, was ramping up in frantic preparation. For me, this was a new experience and the hospital felt like a different world than the one in which I practiced every day. In addition to roughly 500 patients, more than 1,600 medical staff and hospital personnel needed to be sheltered, and there were not enough beds for everyone. Despite the bed shortage, they did manage to care for the additional people, many of whom arrived with children, elderly loved ones, and even their pets! Everyone was accounted for daily and food was served three times a day in the cafeteria. Once the winds hit a certain speed, the hospital was locked down, and all staff and any visitors still in the hospital were required to stay inside for the duration of the storm.

In spite of the fact that palliative care had not been deemed to be a specialty whose in-house presence was required for the storm, my nurse practitioner, Kathy Curran, and I stayed at the hospital because we were then following more than forty patients. We took air mattresses and our own food and camped out in our 80-square-foot hospital office with flashlights in easy reach should we lose electricity. Surgeons, hospitalists, ER docs and many others were likewise encamped. Every office, waiting room and conference room was plastered with paper over the windows and signs to keep quiet because groups of medical staff or hospital personnel were sleeping inside.

Timely Decision

As it turned out, my decision to be present during the storm was a timely one and a tribute to the value of palliative care in practice. Patients’ symptoms of pain and anxiety were magnified by the disaster at hand. Emotions ran high for patients, families and staff alike and opportunities to provide comfort were in abundance. The storm left many people with little emotional reserve to cope with difficult medical situations where decisions had to be made. Inevitably, critical discussions were necessary, and who better to have them and to effectively address symptoms than palliative care practitioners.

Families of loved ones on life support struggled with major decisions about the medical plan of care going forward. For those who had decided to liberate their loved one from the ventilator, questions about when to extubate and whether family would stay at the bedside became an even more complex decision. If family stayed, and their loved one passed quickly, they would be forced to stay in the hospital until it was safe for anyone to leave.

Wanting to be very careful that medical staff and families alike were making appropriate decisions not unduly influenced by the storm, Kathy and I offered medical and ethical guidance where needed. At one point in the ER, when we were within minutes of lockdown, and no one could travel, I spoke by phone to a son who had needed to leave his mother’s bedside to secure his home and family. I reassured him that his mother was being well cared for, that her passing had been peaceful and dignified and that she had not been alone. Not only did patients and families benefit, but the staff did as well. We reassured them that the hospital was the safest place to ride out the storm, and offered comfort by listening to their fears for their loved ones outside the hospital.

I really cannot fully describe the experience, but I am proud of how we functioned and what we contributed. Doctors and nurses all over the hospital thanked us profusely for our palliative practices during the storm. In fact, since Irma, there has been so much positive feedback about our presence that palliative care has been designated one of the required services to be present at Florida Hospital Tampa during a disaster.

What Would You Like to Read about in Future Posts?

In “DRops of Wisdom,” we want to feature posts with subject matter that interests you. Please leave a comment or email us with your ideas.

Note: This blog is also posted on the Center to Advance Palliative Care website.

Mary Alfano-Torres, MD
Vice President, Chapters Health Palliative Care

Mary Alfano-Torres, MD, has dedicated her career to delivering quality palliative care services to patients facing complex and complicated medical conditions. As vice president of Chapters Health Palliative Care, Dr. Alfano-Torres provides palliative care consultations at area hospitals, meeting with chronically ill patients and their loved ones. She discusses the illnesses they are facing, offering guidance and helping them put in place realistic plans of care as they move forward.

Dr. Alfano-Torres joined Chapters Health Palliative Care in 2013. Previously, she was the Palliative Care Department medical director at Sacred Heart Health System in Pensacola, Florida. Dr. Alfano-Torres also held positions with the Center for Hospice and Palliative Care in Buffalo, New York, including attending physician and director of the Palliative Care Consultation Service and medical director of the Hospice Inpatient Unit.

Dr. Alfano-Torres has also dedicated time to educating future physicians. She held faculty positions at the State University of New York at Buffalo and Michigan State University in East Lansing, Michigan Dr. Alfano-Torres earned her Bachelor of Arts in Psychology from the University of Rochester in Rochester, New York; her medical degree from the State University of New York at Upstate College of Medicine in Syracuse; and completed her residency at Michigan State University in Lansing. She is also a fellow in family practice; a diplomat of the American Board of Hospice and Palliative Medicine; and a diplomat of the American Board of Family Practice.

Post-Hurricane Resources

Forbearance for Mortgage and other Loans

With many Florida homeowners suffering Hurricane Irma damage to their property, some might have trouble making their normal mortgage payment. Since so many counties across the state were declared a federal disaster area, homeowners may be eligible for a deferment or forbearance of their mortgage payment.

What does this mean? Your mortgage may be waived for a set number of months at no adverse credit effect on you. Unfortunately, it is not automatic. You must contact your mortgage lender, and apply for the deferment. Typically, each mortgage lender has a different set of rules. Therefore, it is a good idea to call and ask. If you skip a couple of payments, the lender usually will add the payments to the end of the loan without any negative impact to your credit. However, during this time, interest will still accrue.

You can look up your mortgage company via Fannie Mae and Freddie Mac.

Additionally, many banks and credit card companies are extending the same forbearance of payments similar to the mortgage companies. Check directly with your bank and/or credit card company to find out their specific policy.

FEMA Disaster Hotline Information

FEMA designated the following counties as those eligible for assistance:

Alachua, Baker, Bradford, Brevard, Broward, Charlotte, Citrus, Clay, Collier, Columbia, Desoto, Duval, Flagler, Gilchrist, Glades, Hardee, Hendry, Hernando, Highlands, Hillsborough, Indian River, Lake, Lee, Levy, Manatee, Marion, Martin, Miami-Dade, Monroe, Nassau, Okeechobee, Orange, Osceola, Palm Beach, Pasco, Pinellas, Polk, Putnam, Sarasota, Seminole, St. Johns, St. Lucie, Sumter, Suwannee, Union and Volusia.

Visit DisasterAssistance.gov to apply for assistance online. If you experience difficulty applying online, you may also call (800) 621-3362 / TTY (800) 462-7585 to apply during standard hours of operation (7 a.m. to 11 p.m. Eastern Time), 7 days a week.

You can also check your application status at DisasterAssistance.gov. Survivors have 60 days from the date of a declaration for Individual Assistance to apply for assistance.

Please note that if you are eligible for an Individual Assistance grant you are not required to pay back the grant to FEMA. There is no income threshold for Individual Assistance grants, but you may be referred to the Small Business Administration (SBA) for a low interest disaster loan to assist in your recovery. These low interest disaster loans for homeowners and businesses from the SBA must be repaid.

When you register for disaster assistance either online or by phone, you will need the following to complete your application:

Social Security number
Address of the location where the damage occurred (pre-disaster address)
Current mailing address
Current telephone number
Insurance information
Total household annual income
Routing and account number for your checking or savings account (this allows FEMA to directly transfer disaster assistance funds into your bank account).
A description of your disaster-caused damage and losses

Free or Low-Cost Legal Advice

The following are some resources for people who might have already applied for hurricane assistance and been denied, or need legal advice for a claim.

Community Legal Services of Mid-Florida – Community Legal Services of Mid-Florida (CLSMF) is the primary provider of free legal aid for low to moderate income residents in Central Florida.

Florida Rural Legal Services – Florida Rural Legal Services, Inc. is a private, non-profit corporation, which provides free civil legal services to indigent families and low-income elderly people in thirteen counties of South Central Florida.

Bay Area Legal Services– Bay Area Legal Services is a non-profit, public interest law firm that provides civil legal assistance to low-income residents in the Tampa Bay region.