compassion

“Let me know if there is anything I can do”

Published by unknown hospice physician

“Let me know if I can do anything.” How many times have we uttered that sentence when a friend, distant relative or a colleague has informed us they have suffered a loss of a loved one? Don’t get me wrong, I’m sure most of us mean it and it seems like the right thing to say along with “I’m so sorry.” When I look back through my life, I can easily count how many times people have taken me up on my offer. As you’ve guessed, and I’m sure you can relate, it’s 0 number of times. In a time of loss and pain, people don’t want to ask others to go out of their way to help. They aren’t going to tell you they have no energy to cook, need help watching children, money to pay the bills or buy groceries. They won’t tell you they just need a hug and your gentle presence. We are afraid of impinging on people’s privacy and space. We don’t know what words to share or how to behave and in that uncertainty of what to do or say is where the subsequent isolation occurs for the one grieving. The isolation then leads to a sense of loneliness despite the rich number of friends and family willing to help but not knowing how.

Now that I’ve been through losing a close family member to cancer and experiencing the pain of grief, our family was grateful for people’s thoughts and prayers, however, we very much appreciated those friends who did simple things such as bring us a meal, watch our children (so we could have some quiet time) and checked in on us to see how we were doing. It was those who walked in our shoes through their own similar experiences who didn’t shy away, knew the right words to say and were insistent on being there for us in a tangible way. So what can you do if you haven’t walked in our shoes but want to be there for your friend, colleague or relative who’s lost a loved one?

Here are few suggestions which really helped our family.
1. Ask “How are you doing?” The question is open-ended enough that it allowed me to elaborate on the days I felt like talking or cut the conversation short on the days I didn’t. There were days I didn’t want to talk about my feelings, however, I felt more alienated by those who never asked. The common mistake most people make is to assume they will make the person more depressed by asking, hence, reminding them of their pain.
2. Bring a meal. Sounds simple enough, however, this was much appreciated on several occasions when there was no time or energy to feed my family. Close friends didn’t ask if they could bring us a meal, they just asked what time they should drop it off.
3. If there are small children in the family offer to watch them or pick them up from school. We were so grateful for those families who took our children for play dates or out to meals with their children. It gave us some down time to let us be present with each other and our feelings.
4. Consider gift cards. This is helpful whether there are financial constraints or not. If there are financial constraints, I think it’s harder for people to accept cash, therefore, a gift card to a local grocery store or department store will be appreciated. On the other hand, we were given gift cards to local restaurants, which as stated above, allowed us to spend more time with family than worrying about cooking and cleaning.
5. As a follow-up to #1. We noticed immense support initially, however, it began to dwindle as the months went on which is understandable, however, those that have walked in the same shoes have continued to check in with us and see how we are doing. Nothing too intrusive but that great open ended question of “How are you doing?”

This is a short list but nevertheless a few suggestions that pulled me through some of the darkest times during the grieving process. For those that have gone through losing a loved one, what to do for a friend feels more natural, however, I hope this blog post will help others who genuinely want to help but don’t know how. It would be great to hear more suggestions from those who have experienced support from others so that I can expand this list.

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National Nurses Week Spotlights Most Trusted Profession

Published in nurse.com by Eileen Williamson, MSN, RN

You are celebrated during National Nurses Week for the many contributions you make to the nursing profession and the healthcare of our nation. The word “excellence,” in fact, is one we hear more than any other during Nurses Week.

Hospital executives and administrators, board members, physicians and various healthcare professionals join in the celebrations because they know that without you, their patients would not receive the same level of care.

At each event, you are recognized and applauded for your numerous achievements and accomplishments by your fellow nurses and other healthcare professionals who work closely with you and understand firsthand the excellence you bring to all you do.

Newspapers and TV stations run stories on outstanding nurses and nurse heroes who have gone above and beyond in their patient care.

Grateful patients and family members post their gratitude on social media. Even Hallmark sells nurse-themed greeting cards. My memories and recollections of Nurses Week I can’t recall a May during my four decades of nursing that didn’t include a National Nurses Week celebration. Over the years, the week became an important one for nurses across America, and each of them celebrated in some way, for the same types of reasons, at the same time.

I recall the planning that went on in anticipation and the special camaraderie and professional collaboration we all felt because we were working together. There were special gifts and meals, and each event was important. Everyone got involved and took on some type of assignment to make each event meaningful and memorable.

I remember how much it meant to all of us, and how each one of the days of our celebrations had programs to recognize different things. Who was in charge on what day was an important detail.

Celebrations took place on different shifts, and members of hospital administration came in at different times around the clock to visit patient care units and meet, greet and thank the nurses on duty. There were programs at which awards were given for research projects, poster presentations, advances in safety, recognition of special accomplishments in patient care and leadership, and more. Nurses were honored for leading special initiatives, spearheading change and heading up important projects.

I remember, too, that each year the art and science of nursing was recognized in some way. Since the time of our founder — Florence Nightingale — the art and science of nursing have been defined in different ways, and I think many of us have our own definitions.

To me, the art of nursing is the unique and individual piece of self each of us brings to our practice. The knowledge, theory, skill and experience we share with our patients is the science. Celebrations have changed over time, but the recognition of nurses’ scientific achievements and creative accomplishments have remained.

The two always worked beautifully together and were celebrated — together and beautifully as part of each Nurses Week.

Let’s revel in the meaning of Nurses Week together This week there will be many excellence programs and award ceremonies in healthcare facilities across the country, and each one will reinforce that our nursing careers are gifts for us to hold on to, treasure and nurture.
As you reflect on the meaning of this special week, we hope you will read our special National Nurses Week issue as a keepsake.

Read it, share it, refer back to it and take in all it has to offer.

Nurses, always remember to:
• Stay involved, current and abreast of professional research and advancements.
• Participate in your nursing organizations, conferences, conventions and seminars.
• Advance your education and professional certifications.
• Continue to work and learn together.

In the celebration of each Nurses Week over the course of my career, I’ve seen nurses move from rendering care to planning and designing it. In so doing that, nurses have changed the face of our profession and of healthcare. I’ve seen the public come to know us better as they met us in almost every healthcare encounter they had. It’s not just in the emergency room, operating room, delivery room or patient room, but also in physicians’ offices, ambulatory care, urgent care centers, board rooms, courtrooms and more.

I saw that in the end, the people have come to see us as the most trusted and ethical profession of all. And that gives all of us something really big to celebrate this week.

Happy National Nurses Week!

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How to Become a Social Worker

Every day, the nation’s 680,000 social workers work to empower and elevate millions of people, including some of the most vulnerable in our society.

National Professional Social Work Month in March 2019 is an opportunity for social workers around the nation and world and their supporters to educate the public about the invaluable contributions of the profession. 

Being a social worker is a rewarding profession. Following are tips on how to get into the field and the academic background needed.

According to socialworklicensure.org, there is no better time than now to become a social worker. Professionals in the field address social ills through diverse specialties. Whether you want to work with children in public schools, with elderly individuals in care facilities, or in various healthcare branches, social work provides several fulfilling employment opportunities.

The Bureau of Labor Statistics projects 16% employment growth for social workers between 2016 and 2026, much faster than the 7% projected growth rate for the economy as a whole. This projected growth is partially attributable to the continuing demand for social workers who specialize in working with children and families. Moreover, the increase in healthcare facilities around the country has stoked demand for social workers to assist aging populations, mental health patients, and substance abuse patients.

What Does a Social Worker Do?

It is helpful to think of the various responsibilities social workers have. All social workers deliver specialized care, helping individual patients address a particular challenge or obstacle in their lives. At the macro level, social workers may also institute large-scale organizational change.

Typical day-to-day social work duties include identifying, evaluating, and addressing client needs in individual, group, and community settings. Client care often involves helping people cope with daily challenges, and many social workers work with mental health specialists, such as counselors and psychologists.

School social workers often collaborate with teachers, parents, and administrators to improve students’ academic performance and support their social development. Healthcare and mental health social workers find employment in hospitals, clinics, and clients’ homes. Social work careers often center on helping clients transition from care facilities back to their daily lives.

Bachelor’s Degree in Social Work

A bachelor’s degree in social work is the field’s minimum credential. Social work bachelor’s programs provide a comprehensive overview of the field. Students typically learn about case management, community and program organization, and utilizing community resources. Undergraduate social work students acquire essential skills for client advocacy, crisis response, and treatment design.

Students who earn an online degree in social work often focus on one area of specialization. Commonly offered specialties include child and family services, geriatrics, hospice, and school social work.

Many states require social workers to hold a master’s, so it is important to determine your state’s licensing requirements when choosing an online bachelor’s degree in social work. That said, some social workers may practice without licensure.

After completing an on-campus or online bachelor’s degree in social work, graduates find employment in school settings, child and family case management, mental health, and substance abuse recovery.

 

 

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Five Reasons Home Health Care Is on The Rise

Published in Third Age by Tina Marrelli, MSN, MA, RN, FAAN

If you have tried to get care at home for a loved one, it may have been a difficult and time-consuming process. You are not alone. I also had the experience of trying to find care for an older adult family member, and though I have worked in home care for many years, it is not an easy experience. According to the National Association for Home Care and Hospice, around 12 million people in the United States (U.S.) receive home health care from more than 33,000 provider organizations. As the population continues to grow, that number will likely more than double by 2050, increasing to 27 million.

Here are five factors contributing to the complexity.

*Aging of the population. This has been referred to as the graying tsunami, and for good reason. The projection that roughly 10,000 baby boomers will turn 65 each day, and that this trend will continue for the next 19 years, is staggering, no matter how many times it is repeated.  In the U.S., one of the fastest growing segments are those people who are age 85 or older. Called the “oldest old” by the National Institutes on Aging (NIA), they constitute the most quickly growing segment of the U.S. population. And now think about how many people you know who are in their 90s and maybe have passed the 100 mark? My sweet father-in-law moved in to our home when he was 93 and lived with us for three years – until he died at our home with care and hospice support. This scenario is not unusual. And think about the health implications in the oldest old with the frailty and other challenges that come from living to that age.

*Home care means many things. There are home health agencies certified by Medicare and Medicaid. These are agencies that provide what are called “intermittent” visits by nurses, aides, therapists and/or social workers. These services are provided under a physician-directed plan of care. There are specific rules related to coverage and care provided and like any medical insurance program, there are covered and non-covered services. There are also private duty organizations that provide services, such as a “shift” of 4 or 8 hours. In this instance, a family may contact a number of organizations to obtain an aide to be with and care for a family member who might have personal care needs, such as a need for assistance with bathing, dressing and/or meal preparation.  There are also home care services that are provided to very ill or technology-dependent people at home, and they may need specialized nursing care, such as that provided by a registered nurse.

*Lack of enough trained caregivers. According to the Bureau of Labor Statistics, (BLS) home health aides and personal care aides are two of the fastest growing jobs. In fact, according to the BLS, their job outlook, defined as the projected numeric change in employment from 2016-2026, is 41 percent; which is much faster than average. The employment increase is estimated at 1,208,800 more aides!  Varying factors contribute to organizations having trouble finding and then retaining more aides.

*Chronic conditions and the growing complexity of care. According to the Centers for Medicare and Medicaid Services, it is estimated that 117 million adults have one or more chronic health conditions, and one in four adults have two or more chronic health conditions. These conditions can include cardiovascular (heart) conditions, such as heart failure, respiratory (breathing) conditions such as COPD (chronic obstructive pulmonary disease) or asthma, arthritis, cancer, depression, diabetes and more. Such chronic diseases also demand trained caregivers to help people better manage their health conditions.

*People wanting to age in place. This may be their home or may be an assisted living residence. It was not so long ago that people were cared for primarily at home and oftentimes died at home. Many patients receive care in their homes through the Medicare hospice benefit. In fact, most hospice care is provided in the home setting. Wanting to age in place is a great goal, although it may not always be realistic, depending on the person, the care needs and safety concerns.

So all these kinds of care at home are home care and are increasing the need for these specialized services. The term “home” becomes flexible as people seek the “best” situation for themselves and their loved ones to age in place. There is no question that home care is more complicated than people think. When finding care for yourself or a loved one, ask for (and check) references, read reviews and do your homework. Some of the best knowledge is local, so ask your neighbors and friends who they have worked with when care was needed for their family member.

Tina Marrelli, MSN, MA, RN, FAAN is the author of the Handbook of Home Health Standards: Quality, Documentation, and Reimbursement (6th edition, 2018) and A Guide for Caregiving: What’s Next? Planning for Safety, Quality, and Compassionate Care for Your Loved One and Yourself. 

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Those in hospice need additional care

Published in Picayune Item by Leah McEwen

Those who are in hospice care often have many needs, but don’t always have access to the assistance required.

One of my grandmothers developed Alzheimer’s about ten years ago and lived with it for several years. She was in her 60s when she received the diagnosis. While the onset of the illness was slow, when it worsened, it became unmanageable.

She forgot who we were, disappeared from her home several times and eventually became a danger to herself. As her condition worsened, she also developed several other illnesses, which made taking care of her impossible for my grandfather. Thankfully, my family was able to pay for outside help to provide the care she needed until she passed away.

Unfortunately, this isn’t the case for everyone. Many elderly adults don’t have family to care for them, and do not have the funds to pay for outside help such as a nursing facility or in-house nurse.

Many hospice services fill this gap by providing care that is paid for through donations, or government programs like Medicare and Medicaid. There are also non-profit organizations that can provide everyday necessities like groceries.

I recently met a man in his early nineties who had saved enough money to pay for his livelihood until he reached 85-years-old. He said he hadn’t expected to live past that point, but when he did, he found himself penniless and with no one to turn to.

With the help of local volunteers and nonprofit organizations who discovered his need, he was relocated to a better home, his utilities were paid and he was provided with groceries and medical coverage.

Organizations that help elderly adults and hospice patients in need improve the quality of life for patients and their families.

 

 

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Healthcare services, policies for end of life misunderstood says hospice leader

Reform burdensome Medicare regulations to improve end-of-life care

Published in The Hill By Norman McRae, opinion contributor – The views expressed by contributors are their own and not the view of The Hill

Research shows that more than a quarter of Americans have given little to no thought about how they want to die – or how they prefer to be cared for in their final days. As a hospice care provider for more than 32 years, sadly, this is not a surprise to me.

What too many don’t realize is that with heartfelt consideration and careful planning, death can be a profound, peaceful and personal journey. That is why it is so important that patients and their families have timely access to high-quality hospice care.

Given how warily our culture approaches death and dying, health care services and policies surrounding the end of life are often misunderstood. At the expense of comfort, precious time and countless dollars are spent chasing an elusive cure rather than approaching an end of life illness with peace and reflection.

Hospice care provides a holistic experience that focuses on the wishes and needs of the individual. The hospice model involves an interdisciplinary, team-oriented approach to treatment that includes expert medical care and comprehensive pain management but also includes emotional and spiritual support for the patient AND their family. It’s this philosophy that drew me to this field and what I and our team at Caris continue to practice and uphold today.

For more than 35 years, the Medicare Hospice Benefit has ensured older Americans at the end of life could access this philosophy of care. As Medicare’s original coordinated care model, hospice is a program that works.

While those in the hospice community have grown and adapted to meet the needs of those we serve these last 30-plus years, many of the regulations imposed on the Medicare Hospice Benefit are still outdated relics of the 1980s. Thankfully, members of Congress recognize the need to modernize and changes are on the horizon. We welcome updates to burdensome regulations that will improve the delivery of patient care, including the reduction of existing requirements that create needless and time-consuming administrative work for hospice programs. One positive example of this recently discussed on Capitol Hill is the Center for Medicare & Medicaid Services’ (CMS) proposed rule to give more flexibility to physician assistants to re-certify patients who have been in hospice care for more than 180 days – a change broadly supported by the hospice community. We applaud efforts underway in Congress – including the Ways and Means Committee’s efforts to address and cut red tape in the Medicare program.

Policymakers should also consider reforms to make palliative care more widely available and hospice care available in a more timely fashion. This means that they must ensure that any proposed payment reforms do not threaten the integrity of the Medicare Hospice Benefit and the principles on which hospice care was founded.

During my tenure, I’ve seen plenty of change, and I imagine I’ll see more, maybe even policy changes to the Medicare Hospice Benefit. What all involved must remember is that any changes must compassionately consider protecting timely access to care while making sure that regulations are less rigid, duplicative and costly. Failure to implement commonsense reforms could unintentionally disrupt or delay patients’ access to high-quality end of life hospice care. Any new policies must continue to support the basic human right of quality end of life care and protect the values of hospice, the right of patient choice and the integrity of our care philosophy.

Norman McRae is on the board of the National Hospice and Palliative Care Organization (NHPCO), chair of the Hospice Action Network (HAN) and the founder of Caris Healthcare in Knoxville, Tenn.

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‘They Deserve It’: In Foster Homes, Veterans Are Cared For Like Family

By Patricia Kime for Kaiser Health News

With the motto “Where Heroes Meet Angels,” a small Veterans Affairs effort pairs vets in need of nursing home care with caregivers willing to share their homes.

Ralph Stepney’s home on a quiet street in north Baltimore has a welcoming front porch and large rooms, with plenty of space for his comfortable recliner and vast collection of action movies. The house is owned by Joann West, a licensed caregiver who shares it with Stepney and his fellow Vietnam War veteran Frank Hundt.

“There is no place that I’d rather be. … I love the quiet of living here, the help we get. I thank the Lord every year that I am here,” Stepney, 73, said.

Caregiver Joann West calls taking care of veterans Ralph Stepney (left) and Frank Hundt at her home in Baltimore a “joy.” “They deserve it,” she says. (Lynne Shallcross/KHN)

It’s a far cry from a decade ago, when Stepney was homeless and “didn’t care about anything.” His diabetes went unchecked and he had suffered a stroke — a medical event that landed him at the Baltimore Veterans Affairs Medical Center.

After having part of his foot amputated, Stepney moved into long-term nursing home care at a VA medical facility, where he thought he’d remain — until he became a candidate for a small VA effort that puts aging veterans in private homes: the Medical Foster Home program.

The $20.7 million-per-year program provides housing and care for more than 1,000 veterans in 42 states and Puerto Rico, serving as an alternative to nursing home care for those who cannot live safely on their own. Veterans pay their caregivers $1,500 to $3,000 a month, depending on location, saving the government about $10,000 a month in nursing home care. It has been difficult to scale up, though, because the VA accepts only foster homes that meet strict qualifications.

Read full story

 

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How do you celebrate your calling during National Nurses Week?

Published in Nurse.com by Jennifer Mensik, PhD, RN, FAAN

Make a Nurses Week resolution to recognize each other every day.

One of my favorite sayings about nursing is our ordinary is actually extraordinary. We provide an amazing service to the public, whether in hospitals, clinics, long-term care or in the community.

Being a nurse is not something we turn off completely at any time. It doesn’t stop at the end of our shift like many other professions.

We are there to help at a moment’s notice because we care. That perspective of caring is always with us and we believe we are doing what any other person might do in the same situation — that it was our job.

We have become so accustomed to the caring we do and the miracles we assist with daily, that what we and our colleagues do “daily feels” as if it is our job. As nurses, we also don’t like to take credit as we should for the healing that we assist with. Absent our caring, people would not heal and get well, and that is special.

Enter Nurse’s Day and Nurses Week. Celebrated since 1965, the original intent was to raise awareness of the important role of nursing, which mark our contributions to society. Nurses Week was first unofficially observed in October 1954, the 100th anniversary of Florence Nightingale’s mission to Crimea.

It was later changed to May 6 and officially recognized by President Ronald Reagan in 1982. The American Nurses Association expanded the holiday into National Nurses Week, celebrated from May 6 to May 12, in 1990. Over time, this week became the one time of year we as nurses truly expect we should receive external recognition for our contributions.

Organizations may do a variety of things to recognize nurses, ranging from giveaways to receptions. But does this serve the original intent of this week?

Have we all moved away from recognizing the important role in nursing that the outcome of our caring results in one week of food or tchotchkes a year? I am speaking here for administration and all nurses alike.

Let’s make a Nurses Week resolution to recognize each other more than once a year

What if each week throughout the year, you, your unit, department or organization decided to recognize yourselves? What if we recognized each other and ourselves daily? How do we give our gratitude to other nurses? How do we show our caring to others? How might this type of recognition look?

I asked many of my nursing friends how they should celebrate themselves and each other and here are some ideas:

Nursing retreats designed just for nurses by nurses. My colleagues and friends at the Arizona Nurses Association have organized this retreat for four years straight!

The DAISY recognition program is a formal program healthcare organizations can participate in to recognize the work of nurses. This program exists in all 50 states and 18 countries!

In our daily manager and administrative huddles at Oregon Health and Science University we discuss staff who deserve recognition. Clinical and non-clinical staff and managers know to escalate stories so individuals are recognized. There always are several staff members mentioned daily during these huddles.

Celebrate little victories, such as when a patient finds solace in music or speaks for the first time after visiting with a therapy dog. This might be just part of your routine day, but it is yours to celebrate. Take a moment to reflect on how your caring was part of this patient’s victory.

Write a letter to the editor in a non-nursing-related newspaper or magazine that reflects positively on the nursing profession.

Have a nursing school reunion.

Attend your state nursing association conference.

When we do not stop to recognize ourselves and others, we are not supporting ourselves or each other. When we don’t support each other, individually we can burn out and experience compassion fatigue, which makes it harder to provide a healing environment for those in our care.

Patients and families can tell when we don’t or can’t care any longer. Worse yet is we start to exhibit bullying behavior to others, instead of compassion and caring our colleagues and fellow nurses need just as much.

Nurses Week shouldn’t and can’t be just the only time we recognize, celebrate and demonstrate the importance of nursing. Each of us need to commit to a Nurses Week resolution to celebrate our profession, ourselves and each other each day!

Jennifer Mensik, PhD, RN, NEA-BC, FAAN, is division director of care management at Oregon Health and Science University and instructor for Arizona State University College of Nursing and Health Innovation DNP program. She also is treasurer for the American Nurses Association. Formerly, Mensik was vice president of CE programming for Nurse.com published by OnCourse Learning. A second-edition book she authored, “The Nurse Manager’s Guide to Innovative Staffing,” won third place in the leadership category for the American Journal of Nursing Book of the Year Awards 2017.

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Help Your Employees Deal with Grief

Published in MultiBriefs By Lisa Mulcahy

It’s a common scenario, unfortunately. One of the best members of your team suffers the loss of a spouse, parent, sibling or child. Corporations, of course, allow for some bereavement time, but experts say the process of working through the initial stages of grief can last on average between six months and a year, and in some cases even longer.

How do you handle it if this employee breaks down in tears in a meeting? What if his work is temporarily not up to par? How can you best encourage your staff to show compassion and support for her at this difficult time?

Here are five compassionate strategies for helping your workers cope emotionally as they navigate their duties as productively as possible through a profoundly difficult time.

  1. Send condolences

First, it’s a must to send appropriate condolences to your employee in the early days of her initial bereavement. This means a heartfelt sympathy card and flowers sent on behalf of your entire staff. Your employees should also be allowed and encouraged to express their individual sympathy as well.

If a wake and/or funeral is open to the public, attending these services is a strong and supportive gesture you and your employees can also make to show care and respect.

  1. Have a productive face-to-face

The day your employee returns to work, ask him to sit down with you in your office. Express your condolences with sensitivity, and express your sincere desire to support him as he re-acclimates to the workplace.

Ask him directly what he needs. Is it a gradual re-entry into his responsibilities? If so, delegate some of his project work temporarily. Is it more time off? Work with him to see if personal days or vacation time could be used for this purpose.

Listen to what he tells you, and let him know you are here to make things as easy as possible. The Society For Human Resource Management has published some helpful information regarding respite time for grieving workers.

  1. Implement a kindness policy

Encourage your staff to show compassion and offer assistance openly to this employee — and let everyone know this policy will apply to anyone dealing with a loss in the future as well. Grieving professionals repeatedly report in studies that compassion shown by co-workers has a powerful effect on their psyche as they heal, and lets them feel supported so they are as productive as possible. Two interesting pieces of research touch on this concept.

Your employee may become emotional at times during her workday, maybe even crying openly because she can’t help herself. Never judge this understandable behavior — instead, let her know it’s perfectly fine to excuse herself for a short time whenever she needs to. Encourage her co-workers to lend her a hand with supportive words whenever they think she’s struggling, too.

  1. Double-check without judgment

Take the time to follow up on your employee’s work to make sure there are no major mistakes (there will probably be minor ones), but don’t make a big deal out of doing so. If bigger mistakes happen, reassure your employee that you understand this is a temporary situation, and assign a second worker or workers to kindly help him with tasks. This technique can quickly get him back on track without any awkwardness.

  1. Praise her strength

Grieving people can use all the positive feedback you can provide. Don’t hold back on a compliment as to how well she handled a presentation — this will give her confidence as she tackles her next task. At the same time, don’t overdo your praise — your employee doesn’t want to feel singled out as “the griever” in your office who needs to be handled with kid gloves.

Treat her kindly but normally. You’ll be helping her feel more like herself, so she can concentrate well, accomplish more and continue to feel better.

Lisa Mulcahy is an internationally established health writer whose credits include the Los Angeles Times. Redbook, Glamour, Elle, Cosmopolitan, Health, Good Housekeeping, Parde and Seventeen.

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The Other Side of the Conversation

Author: Christopher M. Thompson, MD, HMDC

This article originally was published in Winter 2017 NewsLine.

In this post, a physician connects his personal and professional caregiver roles.

As palliative care providers, we spend our careers talking about end-of-life care and helping families make difficult choices about life and death. Have you ever been on the other side of the conversation, answering questions and making decisions for your own loved ones? I have cared for thousands of patients at the end of life, but recently I’ve been on the other side of that conversation – twice.

My first conversation began with “Momma,” my wife’s 91-year-old paternal grandmother. Her decline started with a kidney stone, which then led to urinary tract infections and tremendous pain. Momma made the decision to have lithotripsy. During the procedure, she had respiratory distress and required intubation. Her heart was not strong enough to tolerate this “routine” procedure. She developed right-sided heart failure and pulmonary edema. Doctors were able to extubate her; however, she continued to have more respiratory distress. She was not doing well. They placed her on Bi-pap but she did not tolerate this. She was in the hospital, agitated, dyspneic, and did not want to be re-intubated.

So now what? Our family had to begin those difficult discussions. Do we continue to push aggressive care? Momma told the family she was tired and ready to die. It was hard for our family to acknowledge what this meant even knowing her wishes. Added to that, it was two weeks before Christmas and my family lived six hours away from Momma. We decided my wife and our three-year-old daughter would travel to Georgia while I stayed home to work. I wanted my wife to be there for the conversation in person and to see her grandmother, as I knew this might be her final days on earth. After discussing options, the family agreed to inpatient hospice care.

I was too involved with work and like many times before chose work over family. My wife was at Momma’s bedside for less than 24 hours when she called me telling me that Momma was asking for me, “The Doctor.” I pulled myself away from work in the middle of the day and headed to Georgia.

I was now being asked medical questions as well as “what about Christmas?”, “what do we tell the great-grandchildren?”, and “is this the right thing to do?” I did not have answers. I had memories and emotions for this woman I loved; I did not want to think, “Momma is dying.”

All the signs were there; it was her time to die. The family began the journey with Momma. I have worked in three different inpatient hospice facilities. It’s easier for me to study the staff, their workflow, their EMR, their census, their medical director – this is what I know. My wife reminded me that this time, I was there for Momma and our family. I was not “The Doctor” now; I was family.

Staff managed Momma’s symptoms quickly and she had two good days talking and interacting. We had made the right choice, albeit not an easy one. Long days and nights at the hospice home wear a family down. Hospice staff participate in these experiences daily. We think how hard it must be for the patients and families. When you are on the other side, you feel the sorrow and you learn a lot about the value of hospice care.

Momma died peacefully four days later. We returned home to North Carolina, only to receive a phone call that “Granny” was in the hospital. Granny was my wife’s 78-year-old maternal grandmother. She had Alzheimer’s disease, had fallen at home, and had developed altered mental status. She was not eating, she had a UTI, and a CT scan showed a small hemorrhage in the frontal lobe. Granny was agitated, not eating, and declining. So now what?

Just three weeks earlier we had lost Momma. Now our family was deciding on inpatient hospice for Granny.
My wife, daughter, and I packed the car and headed for Florida. I took the time from work, but I was still on call and was on the phone, giving orders the entire trip. Once again, it was easier for me to do my work as a hospice physician than confront what I had no control over. We were losing both our grandmothers within three weeks.

As we arrived in the middle of the night, we received a call letting us know Granny died. She had declined quickly. That was truly a blessing. After all the heartbreak and tears, we went to Granny’s house and celebrated her life. This is what she would have wanted.

Those two experiences remind me how hard end-of-life conversations are for families. We as palliative care providers need to remember it is different when there are memories and emotions involved. No matter how informed our families are, these decisions are not easy. And, it’s hard being on the other side. We are no longer medical professionals, we are family. All our medical training leaves our mind and we become an emotional basket case. We find it hard to think straight or make rational decisions. It’s difficult living with the decisions and through those choices.

I’m 40 years old, my parents are approaching retirement, and my grandparents are dying. I have friends who are struggling with acute and chronic illnesses. All of this has made me a better hospice and palliative care physician and I’m glad I can reflect on my training and life experiences to help my patients and families. I make the conversations personal and emotional. I have more empathy during family meetings. I think this adds a new dimension to the work I do, the work I’m proud to do.

These two experiences brought our family closer together and I’m grateful I could help in the decision-making process. My family saw firsthand how our jobs as hospice and palliative care providers are intensely emotional. We all need to realize the impact we have on the families we care for, how a well-trained hospice and palliative care staff can have an impact on a family.

During our trip home from Florida, my wife looked at me and asked, “How do you do this day after day? I am proud of you and now understand your job even more and how rewarding it must be.”

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Christopher M. Thompson, MD, HMDC, assisted in developing the palliative medicine programs at two hospitals prior to joining Transitions LifeCare as Medical Director for Transitions Kids, Transitions LifeCare’s pediatric hospice program. Dr. Thompson is board certified in Family Medicine. After completing his Fellowship, Dr. Thompson became board certified in Hospice and Palliative Medicine with the added qualification of Hospice Medical Director Certification.
 

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