Coping with Loss with Little Bereavement Leave

A report on MSNBC discusses the challenges of coping with a loss and balancing work committments. Many employers offer limited bereavement leave. From the article:

"Some workers don’t even have access to any type of paid leave when a death occurs. According to a 2007 study by the Bureau of Labor Statistics, 69 percent of workers in the private sector get paid funeral leave. Among companies with 100 employees or more, the number rises to 81 percent, while only 57 percent of small businesses with work forces of under 100 provide funeral leave.
When they do get it, two to three days of paid bereavement leave is the norm for most U.S. businesses and there are no signs that will be changing any time soon. 'That’s the rule of thumb,' says Peter Ronza, compensation and benefits manager with the University of St. Thomas in St. Paul, Minn., and an expert with the Society for Human Resource Management.

"But is it enough?

"'Three days is a tragedy,' says Russell Friedman, author of 'The Grief Recovery Handbook' and executive director of the Grief Recover Institute. 'Some companies are extraordinary and have big hearts when it comes to giving time off after a death, but many are stuck in the dark ages.'
Workers need at least a week, he says, to deal with all the logistics surrounding a death and burial, especially given many of us don’t live near our loved ones these days. Not to mention, he adds, that people need time to grieve the loss because they won’t be as productive right after the death of someone close."

The article suggests finding out what your company's bereavement leave policy is now, before you need it. Check out the message boards for this article to see what other people are saying. And if you are dealing with a loss while still needing to work, the article offers this advice:

• Grief breaks. Take snippets of time away from you desk to cry, or to have time to recoup.


• Get a phone or e-mail pal. Connect with someone you know and trust and tell them if you’re hurting, or having a particularly hard day. Don’t let the feelings build up inside.


• Get writing. You don’t have to start a journal. Just write out your thoughts from time to time, especially if you don’t have someone to communicate with while you’re at work.

New Emphasis on Treating the Elderly in Medical Schools

The Boston Globe reports that medical schools across the United States are increasing the focus on treating older patients. The article talks specifically about the programs at Brown University, Harvard, and UMass. From the article:

"By 2030, Americans age 65 and older are expected to account for about 20 percent of the nation's population, up from 12 percent now. Grants from two foundations and the Association of American Medical Colleges, awarded over the last eight years, have fueled the curriculum changes to meet the expected need for geriatric expertise."

Local Hospice Founders Honored by Community

This is an inspiring story about how five women's personal experiences with hospice inspired them to found a hospice in their community in South Carolina over 20 years ago. It includes a video clip from a ceremony where the women were given an award from the local newspaper.

They Don't Listen to Me

Robert Washington

I recently went to the hospital to assess a young woman for hospice acute inpatient care. Rating her pain 10 out of 10, she described it as coming from three sources—a Stage IV decubitus sacral ulcer, metastatic ovarian cancer spread throughout her abdomen and burning sensations running down her legs. I assured her that she could be helped, i.e. her pain could be significantly reduced within days if admitted to the inpatient hospice unit.

Although grateful to hear that help was on the way, she felt compelled to tearfully share that her greatest distress came from the fact that “they don’t listen to me.” She went on to explain that she pleaded with the nursing staff to reduce pressure on the ulcer yet they continued to ignore her, moving her by dragging the linen beneath her body. Her anguish was palpable as she cried: “The doctor announced that I’m going to die, but I’m not ready to give up.”

I explained that the task of hospice is to “gentle the journey” and reiterated that her pain could be better controlled—that very, very few people have to suffer pain of that magnitude in 2008. I further explained that the hospice philosophy is person-centered and based on informed consent. Thus, nothing would be done to her without her permission. This included, for example, moving her to change her bed linen. Finally, I told her that no one has any right to take away her hope and that she should go on believing that she would improve despite the view of the medical profession. I explained that people in her condition have the challenging tasks of both preparing for death while believing in a miracle and that she, like others, could do both.

This discussion took place in the presence of her siblings who had felt helpless watching her suffer. I used the opportunity to stress that hospice views the patient and those who love her as the locus of our concern—that we would provide emotional and spiritual support to her and her siblings and support them through our bereavement team for 13 months following her death. I clarified with all of them where the patient would go after her pain was better controlled and assuming she did not experience further decline. We discussed the pros and cons of a “Do Not Resuscitate Order,” and the patient opted to have one.

With approval of the inpatient director, the patient went to the unit for symptom (pain) management and died peacefully after being converted to Methadone for pain relief.

Tension and anger were no longer compounding her pain. She felt that hospice professionals were listening; she relaxed and allowed nature to take its course.

Robert Washington, Ph.D., MDiv

Communicating with Hospice Patients and Families

Vince Chiles

Vincent Chiles, LCSW has a master's degree in Social Work from Arizona State University. He works as a hospice supervisor for Covenant Home Care, a faith-based not-for-profit hospice provider. Vince has worked in hospice as a social worker and supervisor for over 9 years in Arizona and Pennsylvania. He has also worked as a drug and alcohol counselor, school counselor on The White Mountain Apache Reservation, and mental health therapist. HFA recently interviewed Vince for our e-newsletter.

Q: You’ve worked in hospice for many years now. What are some of the “common threads” that you see when communicating with hospice patients and families?

A. One of the greatest dilemmas is simply educating both families and professionals about what hospice care is. Even if we are simply trying to give them basic information, it’s sometimes like “selling snowballs in a blizzard”; very few people want to talk about death and dying until they really need to do so.

But yet, one of the most common phrases I hear once a family has experienced hospice is, “We wish we had known about hospice sooner…” I think something in that phrase signals what is really a normal grief reaction. It’s very typical for families, after a loved one’s death, to wonder in hindsight what could have been different about the experience; in many ways, that’s a way for them to begin processing the loss.

Read the full interview by clicking the "read more" link below.

Q. What are some of the common myths or misperceptions that you find about hospice?

A. The first is always that “hospice is a place you go to die”, and that hospice care only really happens in the last days or hours of life. Another common myth is that patients in hospice are “ready to die”--ie, someone will tell you that their loved one is not “ready” to die, and therefore hospice isn’t necessary yet. In all of my years of experience I have never met a person who wants to die, but I have met many who want or are ready for release from their pain and suffering. This misconception brings to mind a Navajo belief that if we think something bad will happen, we’re inviting that thing to happen. It’s a very unconscious, almost archetypal response, yet it can keep families from receiving the full benefits that hospice can provide.

Q. Once a patient is in hospice care, what information is most important to the patient and the family, especially when death is imminent?

The first thing that families need is the knowledge that there is a person who is willing to listen to them and hear their concerns. They need someone who is willing to be present and support them, especially as the death of their loved one approaches.

I often use the analogy of being a new parent, having a fear that your actions may somehow cause discomfort or distress (some parents even think they might “break” the baby!) Many families experience similar fears when a loved one is dying--will I do something to hasten the death, or to cause suffering? But just as new parents intuitively understand how to be kind and loving, families whose loved one is dying should trust that same intuition.

In hospice, we often find that family caregivers may ask the same question many times, even when they’ve heard the same answer before. Facing the death of someone you love is emotionally overwhelming, and families need to be patient and gentle with themselves. Hospice staff truly believe that there are no stupid questions; families should always feel that they can ask whatever questions they need to, whenever they need to.

Q. The actual dying process can be a confusing and difficult time for family members, even with the support of hospice care. What advice do you offer from a professional perspective?

A. One occurrence that I see often, both with families and professionals, is the onset of what I call “elder speak.” Seemingly out of protection, or a perceived way of expressing comfort, families and professionals will being speaking to the dying person in a high voice, almost in a childlike tone. While this type of communication comes from concern, caregivers need to remember that the dying person is first and foremost a person. That person had a full life, spent in a career, maybe raising a family, making connections with friends. That person experienced trauma and loss and developed coping mechanisms along the way. Most patients in hospice are older, so they have maturity and wisdom. It is tragic to me that these people are often treated more like children as death approaches, when what they truly need and deserve is dignity, respect, and honesty.

Q. Hospice care offers a unique system of support to families while a loved one is dying. How does that communication and support help families after the death?

A. After the tragedies of September 11, there was an increased awareness of the grief surrounding sudden and traumatic loss. The #1 indicator that prevents complicated grief has been shown to be the ability for someone to say goodbye to a dying loved one. I would say that 99.9% of the time, hospice does a wonderful job educating families about the importance of using the time in hospice care to say goodbye, to make amends and complete any unfinished business. In my experience, I truly see most survivors in hospice doing very well throughout their grieving. A woman who runs one of our support groups observed that few of the families served by our hospice actually attend our groups; that may be in part because the experience of their loved one dying in hospice care really aided them in their grief journey, even before the death.

I see death as the second great mystery of life, after birth. Yet in death, the mystery is compounded because there is no tangible proof of that mystery, like the proof that a new baby can provide. That absence of life confuses us, and that is grief.

If families are given the opportunity to do everything they can for a loved one during the dying process, and given support to muster the courage to be really present during that time, that experience may bring a better understanding and acceptance of this mystery. When hospice survivors generally feel like they did everything they could, that can help them grapple with the “what if’s?” that may well up during grief.

Q. HFA’s upcoming teleconference will be focusing on Children and Loss. In your experience, what do you find important in communicating with children about death and dying?

A. People who work in hospice are so passionate about it, and what often drives them is seeing the results of their work in action. Having the opportunity to teach children that death and grief are natural processes in life can be extremely rewarding.

As with adults, platitudes and patronizing are not good. A quote attributed to Albert Einstein says, “The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift.” Kids have not learned to live by that “servant”; they are extremely intuitive. Kids need honesty and the opportunity to share their feelings and emotions, without sugarcoating or trying to make it “better” than it is.

I once worked with a teenager on a reservation. He and his friend had both been drinking. He passed out outside, his friend passed out inside, and then his friend died when the house caught on fire. This teen was a textbook example of a dysfunctional, deviant individual. Yet the first thing he asked when I met with him was if I would help arrange for a Medicine Man to come pray for him and his friend. Intuitively, he knew what he needed and was able to seek out that very personal solution.

And we need to remember that kids change; every year, it seems they are a new person, a new personality. Paying attention to those developmental changes is very critical. Adolescents especially need to be given opportunities to grieve that allows their integrity and personality to remain intact. I once worked with a Mexican-American family in Arizona whose grandmother, the matriarch of the family, had died. She had over 50 grandkids, some of whom were teen gang members. A typical support model, like attending a teen grief group, was not going to work for these boys, but yet they were all devastated by the loss. I suggested to them that they go into the bathroom and run the water as loud as they could, to give themselves a way to express that grief and still retain their sense of self that was so important.

Q. You are clearly passionate about hospice and the work that you do with dying patients and families. What about hospice care do you find most compelling?

A. Hospice care allows us to acknowledge that quality care for the dying is just as necessary and valid as is curative care. To me, hospice families are modern-day heroes. As they care for a loved one who is dying, they face their own deepest concerns and fears. These families are willing to go to a real threshold, and a true shift can happen in that process. It is our vulnerabilities that unite us; working in hospice allows us the opportunity to help families make the most of that and to offer support along the way.

Supporting Children Coping with Cancer

An article from the Baltimore Sun addresses support groups for children who have a family member with cancer. The program, started by the Children's Treehouse Foundation, is called CLIMB (Children's Lives Include Moments of Bravery.) The group notes that there are 1,400 cancer hospitals in the U.S., but only 50 to 60 such programs with emotional support groups for the children of those patients.

HFA's 2008 Living with Grief live-via-satellite teleconference will focus on the experience of grieving children and adolescents and the ways that hospice professionals, teachers and school administrators, grief counselors, funeral directors, and parents can best support these populations as they cope with loss and grief. Learn more about the program, to be held April 16, 2008 and find out where you can view the program near you.

End-of-Life Decision Making

Their names were Joe and Helena, and as we sat in the living room, their anguished expressions and trembling voices said it all. Their mother, Rose, had end-stage cancer and had just come home from the hospital on hospice care. Joe and Helena diligently shared the caregiving responsibility. They were eager to discuss a range of issues with me, but one thing troubled them in particular:

“The worst thing,” said Joe, “is how much she hates the feeding tube in her stomach. It’s so uncomfortable for her when we pour in the food. She has said all along that she didn’t want the tube, but when she was in the hospital they told her it was necessary temporarily, so she reluctantly agreed to it. The problem is, she’s never going to be able to eat on her own, so now the tube can’t come out.” [Read the full article here.]
His sister nodded tearfully and agreed, “When we put the food in, she looks at us pleadingly, asking us with her eyes not to do it. But we have no choice.”

And so began a lengthy, emotional discussion about end-of-life decisions, the goals of care, and the benefits and burdens of treatment. No one had told them that honoring their mother’s wish by removing the tube could be a loving and compassionate decision.

After I left, Joe and Helena continued the discussion throughout the evening and into the night, with each other and with their mother. In the morning they agreed to remove the feeding tube. They kept Rose’s lips and mouth moist, and delivered exquisite comfort care until she died a few days later. At the wake, and several times in the year since, they have expressed how grateful they are that they were able to frame the issue of tube feeding in a way that allowed them to honor their mother’s wishes, make her more comfortable, and give them a sense of peace mixed in with their grief.

Most of us don’t like to think or talk about serious illness and death, so when we find ourselves coping with our own or a loved one’s terminal illness we often feel as though we’re in uncharted territory and have no guideposts by which to navigate. Discussions about what kinds of treatment we want or don’t want at the end of life are likely to be more useful if we have them well before the decisions have to be made. Everyone, no matter how young or how healthy, should have an advance directive and designate a health-care proxy (even my 20-something kids have done so). Designating a health-care proxy is, in fact, especially important. There may be unforeseen circumstances or decisions at a future date, and those decisions will be made by someone; the only way for us to retain control over who speaks for us when we cannot speak for ourselves, is to designate who that person should be.

If it’s too difficult to approach these issues directly in your family, you can start by talking about a news item or a friend’s experience. It’s often less threatening to discuss such issues in terms of someone else. And sometimes it’s helpful to make it a group/family activity (that’s how my kids ended up with advance directives during a family reunion). What’s important is to get the discussion started.

A life-threatening illness can cause families to come together more than they have in years, as it did for Joe and Helena, or there may be so much disagreement and tension that the crisis only makes things worse. In either situation, it’s advisable to reach out to healthcare professionals from different disciplines—nurse, social worker, chaplain, or doctor—who can help us find our way. Culture and religious beliefs inform end-of-life decisions, especially regarding feeding tubes, so it is good to be able to call on people who are familiar with those issues. The transition from curative to palliative treatment is often a difficult one for patients and families, and it’s helpful to have the perspective of professionals who are familiar with the journey. They can help us keep in mind the goals of care, to ensure that treatment decisions conform to those goals.

And in the event of disagreement between the patient’s family and the medical team, a consultation with the hospital ethics committee is advisable. Any interested party can request the involvement of the ethics committee to help resolve disputes.

A life-threatening illness is not only a medical event, it is also an intensely personal journey of the heart and mind. It’s no wonder individuals are likely to approach the experience differently. Families may be torn between hope and despair, denial and acceptance, holding on and letting go, and coming to terms with the family as it is becoming rather than as it was. That is natural. And understandable. And forgivable. When all is said and done, it is not as important to be “right” as it is to be dedicated, humble, and forgiving.
Joyce Davidson, MS, CT

New Guidelines Issued For End-of-Life Care

The American College of Physicians (ACP) has issued new guidelines to address palliative care for seriously ill patients. The guidelines address three common symptoms experienced by patients who are approaching the end of life: pain, shortness of breath (dyspnea), and depression. An article from MedPage Today also addressed how doctors determine when end-of-life care should begin. "Asking clinicians 'Would it be a surprise if this patient were to die within six months?' is being used widely but also has had no rigorous testing," according to Karl A Lorenz, M.D. and colleagues of the Veterans Affairs Greater Los Angeles Healthcare System. Their review of existing literature and reports resulted in the ACP's new guidelines. The article stated:

"For those with serious illness at the end of life, the guidelines recommended that clinicians should:

• Regularly assess patients for pain, dyspnea, and depression.


• Use therapies proven effective to manage pain, which for cancer patients includes nonsteroidal anti-inflammatory drugs, opioids, and bisphosphonates.


• Use therapies proven effective against dyspnea, which include opioids in patients with unrelieved dyspnea and oxygen for short-term relief of hypoxemia.


• Treat depression with proven therapies, which for cancer patients includes tricyclic antidepressants, selective serotonin reuptake inhibitors, and psychosocial intervention.


• Ensure advance care planning, including completion of advance directives, for all patients with serious illness."

Quality of End-of-Life Care To Be Examined in New Jersey

The New Jersey Hospital Association is holding a meeting of hospital medical directors to address patient end-of-life care. The medical directors are looking at a variety of solutions to improve care, including increasing use of palliative care, hiring end-of-life specialists, and promoting the use of advanced directives. The Star-Ledger recently completed a series on end-of-life care in the state, "New Jersey's High Cost of Dying," which showed Medicare patients in the state see more doctors, have more tests, and undergo more procedures at the end of life than in other states.

Caregiving Across the States Resource Has Been Updated

The National Center on Caregiving (part of the Family Caregiver's Alliance) has updated the state profiles for their Caregiving Across the States resource. The resource supplies information about publicly-funded caregiver support programs broken down by state. We found out about the update by reading the Minding Your Elders and Terri's Special Children blogs; thanks for sharing.

HFA’s 2008 Call for Artwork Garners a Big Response

Each year, HFA publishes a companion book for its annual Living with Grief teleconference. In 2007, we initiated a cover artwork competition, soliciting art from hospices and other organizations around the country, and were very pleased with the responses. This year we asked for submissions from children and young adults 21 and under. We were pleased to receive 180 pieces, more than triple what we had received the previous year!

Determining the artwork that would be on the cover, from such a large body of work, was difficult. HFA’s staff expressed their preferences by voting, which narrowed the choices down to five finalists. These selections were sent on to the teleconference panelists to make the final determination. We look forward to tallying their votes and announcing the winner in our February e-newsletter.

Creating artwork can give children and adolescents a safe and appropriate way to express and explore their grief. Many grief programs from around the country submitted work from the children they serve. We are extremely appreciative of all the submissions we received for this year’s contest. You may view all the submissions from this year’s contest on our website, and watch for our announcement of the winner soon!

The Impact of Depression on Treating Older Adults

We read two more articles of note from the January 2008 issue of the CDC's Preventing Chronic Disease journal, which address the impact of depression on the health of seniors. The first gives an overall view of the public health issues.

"Although public health is often conceptualized only as the prevention of physical illness, recent data suggest that mental illnesses are increasingly relevant to the mission of disease prevention and health promotion. Projections are that by 2020, depression will be second only to heart disease in its contribution to the global burden of disease as measured by disability-adjusted life years. Also, as the population ages, successive cohorts of older adults will account for increasingly larger segments of the U.S. population. We present the diagnostic criteria for, prevalence of, and risk factors for depressive disorders among older adults; the challenges of recognizing and treating depression in this population; the cost-effectiveness of relevant public health interventions; and the public health implications of these disorders."

The second looks more specifically at the challenges of treating depression in seniors.

"Depression is increasingly recognized as a significant public health problem among older adults. Because the condition is highly treatable and currently undertreated among community-based older adults, late-life depression is an appropriate focus for disease prevention programs. We report findings from a recent project to review the scientific literature for published reports about treatment for depression among community-dwelling older adults and to recommend the interventions with proven effectiveness. We also summarize the research findings related to each recommended intervention and describe the elements of each. To show the difficulties involved in translating research into practice, we describe real-world experiences in implementing these evidence-based interventions in various community settings. Because depression among older people is viewed more and more as a public health problem, we suggest that partnerships of providers, patients, and policy makers be forged to overcome challenges related to funding, training, and implementing treatments for this condition."

Task Force in Pennsylvania Examines Options for Terminally Ill Children

Last Monday we published a report of a pediatric palliative care project starting in California. This article discusses the Pediatric Palliative and Hospice Care Task Force forming in Pennsylvania to look into the service that are available for dying children and their families. More information about the task force can be found from Pennsylvania's Department of Public Welfare website.

How Elders and Adult Children Discuss End-of-Life Preferences

This study appearing in the January 2008 issue of the CDC's Preventing Chronic Disease examines how adult children and elderly parents discuss end-of-life issues. Two researchers from the University of Georgia interviewed two groups, 15 older adults and 15 younger adults. The researches looked to answer the following questions.

1. How do elders express their EOLPP [end-of-life preparation and preferences] to their children?
2. Are their children receptive?
3. What are the barriers to this exchange of information?
4. What facilitates these discussions?
5. What differences emerge from examining the older and younger adults’ responses separately?
   

One of the research team's conclusions is that there is potential for health care and public health professionals to facilitate the dicussion about end-of-life preferences. They feel that this is a public health issue and offer the study as an initial step in understanding how children and their elderly parents approach the topic of dying.

Journal of Clinical Oncology: From 'Just Say Die' to Discussing Emotions

This article from the Journal of Clinical Oncology caught our eyes on the Pallimed blog earlier this month. Reported this week in the New York Times, the journal has published a study examining the role empathy plays in the treatment of cancer.

Study on Life Span for People Diagnosed with Dementia

The British Medical Journal published a study yesterday showing people with dementia live an average of four and a half years after being diagnosed. The study was conducted in England and Wales and included 438 people over a 14-year period. The researchers looked at whether several factors influenced mortality. Read a synopsis from Science Daily here.

Rosalynn Carter's Editorial on the Needs of Caregivers

In a recent edition of the CDC's Preventing Chronic Disease journal, former First Lady Rosalynn Carter provides an editorial, "Addressing the Caregiving Crisis." The editorial serves as a "call to arms" for American society to face our caregiving crisis. Mrs. Carter founded and is President of the Board of Directors of the Rosalynn Carter Institute for Caregiving in Georgia. After outlining the impact on family and profressional caregivers and U.S. businesses, she writes:

"To address this 'caregiving crisis,' all sectors of society must come together to develop solutions. A broad and coordinated response should address workforce development, community planning, and caregiver education and support, including regulatory and financing issues, more effective use of technology, and development and dissemination of evidence-based practices in caregiving. Building an infrastructure of supports for caregivers will improve caregiver effectiveness and reduce the harm, injury, and burden that can be associated with caregiving in isolation. Most importantly, I believe there must be a fundamental shift in how we value and support caregivers."

Department of Veterans Affairs Providing Hospice Care to More and More Veterans

This press release from the Department of Veterans Affairs discusses the growth the VA has experienced providing hospice and palliative care services to veterans.

"Nearly 9,000 veterans were treated in designated hospice beds at VA facilities in 2007, and thousands of other veterans were referred to community hospices to receive care in their homes. The number of veterans treated in VA's inpatient hospice beds increased by 21 percent in 2007. In addition, the average daily number of veterans receiving hospice care in their homes paid for by VA increased by 30 percent this past year.

Because of the large number of World War II and Korean era veterans and a tripling of the number of veterans over the age of 85 from 2000 to 2010, the increase in the need for hospice care is expected to continue. The proportion of Vietnam-era veterans over the age of 65 will continue to increase through 2014, when Vietnam veterans will account for nearly 60 percent of all veterans in that age group."

Changes That Comes with Alzheimer's Can Strain a Marriage

This article from Cincinnati's The Enquirer addresses the difficult changes that the early stages of Alzheimer's disease can bring to a marriage. As a spouse experience personality changes from the disease, their partner is faces with losing the characteristics they love. The author suggests making a list to help focus on the aspect of the relationship that are still positive. You can also engage in activities that allow you to enjoy the relationship, according to the article. An excerpt:

* singing and music
* reviewing photo albums
* talking about the past
* taking walks or rides
* visiting with animals or children
* engaging in simple projects such as gardening or painting
* assisting with personal care such as shaving, manicures or hair-setting
* exercising and dancing

California Offers a Pediatric Palliative Care Pilot Program

Five counties in California have been selected to prepare a new palliative care program for children with life-threatening illnesses. This would allow children to receive palliative and hospice care, while still continuing with aggressive medical treatment. California's pilot program can offer an alternative to parents who struggle with choosing hospice for their children. An article from the Santa Cruz Sentinel notes:

"Dying is not a prescribed science, especially with kids," said Ann Carney Pomper, executive director of Hospice Caring Project of Santa Cruz County, which takes care of five to 10 children each year. "It's difficult for parents to have to say 'yes' to some kind of indication that death is near.

"With the waiver, 'what is best for my kid?' can be the question," Pomper said.

Emotional Preparations for the End-of-Life Are Also Important

This article from the Gannett News Service, reminds readers that there are more than financial and legal preparations to consider when facing end-of-life decisions. Think about getting your emotional affairs in order at the same time you are completing a will, trust, or power-of-attorney papers. This may include sharing memories with family members or preparing letters for them.

Hospices Reaching Out to the Hispanic Community

This article from The Kansas City Star, discusses how one local hospice formed an entire Spanish-speaking care team to assist in its outreach to the Hispanic community. In the case described in the article, this team included a nurse, personal aide, and a chaplain.

In the excerpt below, the hospice's chaplain, Michael Arciga, gives his thoughts on why Hispanics underuse hospice care.

"There are a couple of reasons that Hispanics might not seek out hospice care, he said.

First, there is a misconception about hospice among immigrants from Latin American countries. The Spanish word for hospice refers to a place, such as an asylum or an orphanage, not a service that brings health-care aides and social workers to a patient’s home or hospital bedside.

“When they hear ‘hospice,’ they think we’ll take their loved one somewhere and take the family out of it,” Arciga said. “I try to provide education that we go where the patient is. If they’re in the home, great. We just support you in taking care of your loved one.”
The cultural tendency to take care of needs inside the family, rather than seeking outside assistance, also can hamper hospice access in the Hispanic community.

“Within the Latino community, as is true in the African-American community, taking care of your own (is important),” Arciga said. “There is a certain level of distrust with people coming in because there’s a fear of what they are going to do. You have to establish that level of trust first, then they will allow you to provide care to their loved ones.”

New Study Examines Caregiving Among Gay Seniors

A study from the Journal of Gay & Lesbian Social Services questioned 199 lesbian, gay, and bisexual adults aged 40-85 about their history of giving and receiving care. The researchers from New York University and Pennsylvania State University, found that older gay adults create networks of caregivers to help support each other as they age. An excerpt from the article:

“These findings contradict old myths about elderly gay people leading lonely lives of quiet desperation,” said Dr. Robert-Jay Green, executive director of the Rockway Institute, a national center for LGBT research and public policy. “LGB seniors create vibrant communities of care that overcome the difficulties posed by discrimination or by greater levels of rejection from their biological families.”

Advice for Oncologists Discussing Death with Patients

Pallimed, a hospice and palliative medicine blog, discusses a recent Journal of Clinical Oncology article that addresses how oncologists should discuss death with their patients. The article encourages physicians to use clear language about death and dying with patients, rather than using familiar euphemisms. Drew Rosielle, the founder of the blog and a palliative care doctor, discusses his take on the article here.

Help for Hospice Angels

Vince Chiles

“You’re such an angel. . . You were sent by God. . . You’re so special, thank you so much.” These are the kinds of comments that hospice nurses, social workers, home health aides, chaplains, and volunteers hear everyday from their patients and patients’ families. Hospice staff have been compared to angels, but unlike their heavenly comparisons are mortal, and as a result are affected by the work they do daily..

Being in close proximity to the terminally ill and dying affects the hospice professional in profound emotional, social, spiritual and psychological ways. It is next to impossible not to form some type of emotional bond to hospice patients, and when they die, the professional and volunteer grieves. The hospice professional and volunteer must temper social interactions with family and friends who aren’t as comfortable talking about death and dying, and might feel as if they, as hospice workers, don’t have people who understand their needs. By working so closely to death, one will naturally question his or her own religious and/or spiritual beliefs, and sometimes wrestle with doubt and uncertainty. As the hospice professional searches for good answers for all the suffering and pain she witnesses, she may also experience psychological stress from this work.

It is important that the seasoned hospice professional develop an arsenal of self-care techniques to combat the potential occupational hazards. I feel the best self-care techniques are those that are natural, effortless and produce instant benefit. By natural I mean that these are skills you already possess. (You may be unaware of their self-care power.) By effortless I mean that these skills require little or no physical effort to perform. Finally, by instant I mean that they only require a few seconds or minutes to perform. Self-care skills that combine these three elements are easy to use and to benefit from. Some examples:

Breathe Deeply: Deep breathing is a great example of a self-care technique that meets the above criteria. Breathing is natural; we all do it, and it is often effortless. When feeling stressed or burdened by the emotional pressures of hospice work, this technique can be used for short periods of time, in a few seconds to minutes, and it produces quick benefits. You perform this exercise by focusing your attention on inhaling and exhaling, and then comfortably allowing each exchange to last three to four seconds. Deep breathing helps to increase oxygen flow to your brain, which allows you to clear your mind and feel refreshed. As a result, deep breathing is a natural, effortless, and instant self-care technique.

Laugh Out Loud: Another easy and fun self-care technique is to laugh longer and harder each time someone tells a joke or a funny story. Laughing has many benefits, from stimulating the immune system to improving one’s mood. Laughing at someone else’s joke improves inter-personal relations, and also helps to promote the other person’s mood. Laughing is natural, it’s simple, and it’s instant. It may feel a little awkward at first, but after you experience its benefits, it will be contagious.

Practice Kindness: We’ve all seen the bumper sticker “Practice Random Acts of Kindness.” Being kind by holding a door open, or by complimenting a store clerk on good service, takes only seconds to do, but kindness can go a long way to promote one’s well-being. We may not think kindness is natural, but it is - our survival depends on it. Kind deeds can be effortless, and the benefits are instant in improving the outlooks of the giver and receiver.

Feel Grateful: Remind yourself to feel grateful everyday. Feel gratitude for the air you breathe, your home, your loved ones, and your life. Gratitude is effortless. It requires only a momentary reflection on what you appreciate in your life. Feeling gratitude is a great self-care technique because it can be done by reflecting on five to 10 things you appreciate today. The rewards of practicing gratitude include a better outlook and increased sense of satisfaction with oneself.

Do you have a self-care technique that you have found especially helpful and easy to do? If so, please share it with us here.

Vince Chiles, MSW