The History of Hospice Care

In conversations with people who don’t work in hospice, or have never had a hospice experience, it’s easy to see how a lot of myths still surround the concept of hospice services. Here’s a little bit of information about how hospice developed into the care that it is today.

The word hospice stems from the Latin word hospitium, meaning hospitality. Early on in its history, hospice provided lodging and care for the weary and the dying. Today, it’s a philosophy and model for compassionate, holistic, end of life care. 

Hospice care, as we know and define it today, was founded by Dame Cicely Saunders. She was a physician who founded the first hospice—St. Christopher’s Hospice in the London area in 1967.

Dame Cicely Saunders was key to developing the whole-person program that hospice care is today. She created an approach that emphasized pain management, emotional and spiritual support, and family counseling. She was also instrumental in spreading the message about hospice care, so that hospice could evolve into the accepted healthcare option that it is today. 

Saunders introduced the United States to the concept of hospice care in 1963 when she spoke at Yale University, according to the National Hospice and Palliative Care Organization. At that lecture was Florence Wald, dean of Yale’s School of Nursing. Wald was so moved by the lecture that she eventually moved to London to work at St. Christopher’s. She then returned to the States and founded Connecticut Hospice in 1974, the first hospice in America. Connecticut Hospice continues to operate today in Branford, Conn.

Another key moment in the history of hospice care was the release of Elisabeth Kubler-Ross’ book, On Death and Dying. Kubler-Ross identified the five stages of dying, and made an argument for caring for patients at home and giving them a say in their care planning.

The National Hospice and Palliative Care Organization was founded in 1978, and is a nonprofit membership organization that represents hospice and palliative care organizations and professionals. The palliative care representation of the organization was added in 2000, as hospices began including palliative care programs and services.

Another turning point for hospice care was the enactment of the Medicare Hospice Benefit. The benefit was first enacted by Congress in 1982, and was made permanent by Congress in 1986, after years of slowly gaining recognition as a viable concept and form of healthcare services for terminally ill patients.

By Carrie Bui, Communications Specialist

Friday Five Helps Family Caregivers of the Elderly

The Friday Five is our weekly roundup of links to smart articles and helpful resources across the Web.

1. One of the notable healthcare blogs out there is kevinmd.com. The site covers a variety of healthcare topics, issues in medicine, patient care, and policy. One of the articles this week was "Why the family meeting is important," and it's one of those issues we stress constantly. Family meetings, sitting down and talking with patients openly and honestly about potential outcomes, including death, are just as important as the medicines and treatments doctors prescribe. Patients and their loved ones need to know all of the options and the effects of those options in order to make informed decisions.

2. We're always talking about family caregivers here, and that's because they are a vital piece of the puzzle. Rev. Amy Ziettlow is a hospice chaplain who regularly contributes to The Huffington Post, and this week her article "The Coming Age of the Family Caregiver" questions how caregiving and aging will change as we move through the baby boomer generation. Did you know that most family caregivers provide 21 hours of caregiving a week, according to the article, and that raises the question of how will we as a nation support these caregivers, and the individuals they're caring for?

3. A number of resources are available in the Tucson area to assist, educate, and support family caregivers. The Living with Serious Illness website offers a directory of community programs in the Tucson, Oro Valley, and Marana areas. Review the Caregivers Resources listings to find agencies in Tucson that respond to the needs of family caregivers. The listed agencies provide consultations, support groups, educational resources, and connection to additional community resources.

4. A lot of times I recommend articles for you to read, but I know a lot of you prefer video. Here's a news interview I found on YouTube about Caring for Your Parents. The video's about 4 minutes long, and recommends some great questions to ask your parents in order to make appropriate plans for the future. And the earlier you have these discussions, the better. There's nothing wrong with being prepared.

5. The Medicare website offers a wealth of information for caregivers and individuals utilizing Medicare. For many aging adults and their caregivers, hospitalizations happen all too frequently. This tip sheet from Ask Medicare, "Planning a Transition from Hospital to Home," helps you plan and prepare for your loved one's safe return home. Their seven tips offer a guide for what to plan for and things to think about as you move from the hospital back to the home.

The Wednesday Image: Butterfly Magic

Butterfly Magic at Tucson Botanical Gardens

Image taken by Crystal Cannon

Hospice care teaches us not only how to approach death with dignity, but also how to appreciate life. The Wednesday Image is a weekly series of images that represent what we love and appreciate most about life in Tucson.

Volunteer Testimonial: Unexpected Gifts From Hospice Care

Serendipity  brought me to Casa de la Luz as a volunteer.  After having searched listings online for appealing, available volunteer positions, Casa was put on my list of possibilities.  A few days later, an article about Casa appeared in our local newspaper, and, after reading it, I decided that it must be a sign that this was the one for me.

Having worked as a K-12 educator and librarian my entire professional life, I really felt the need to do something with an older population.  Also, my mother had spent the last few weeks of her life in a hospice-like facility for terminal cancer patients, so choosing hospice work just seemed to be the perfect way to pay tribute to her.

Going through the Casa training program was enlightening, challenging, and extremely informative, with no sugar coating of what we would be dealing with. In that sense, one really gets a good idea of whether this volunteer work is something they truly want to be involved in. I finished my training in November of 2009, excited yet a bit unsure of whether or not I would be able to rise to the challenge.

My time with Casa over the past two years has included visiting patients in their home or facility as well as the Inpatient Unit, bereavement volunteering, and being available at the memorial services and conferences.

Most of my time with in-home patients has been long-term, spanning several months.  Listening to the stories of their lives and loves, sharing in their past and helping them face the future have been unforgettable and deeply moving experiences.  I recall one of my mother’s nurses sharing that she had learned so much from my mother as she was dying and now, I truly understand what she meant by that.  Each visit with a patient is a unique experience and as long as we keep ourselves open to receiving from them whatever they have to offer, without judgment and with unconditional acceptance, the rewards are immeasurable.

With my in-home, coherent patients, I try to focus on their likes, interests, and strengths, steering the conversation toward those things, bringing magazines about their interests, playing music that they enjoy, and maybe putting together a memoir of their life.  With patients who are unable to communicate fully, I often read to them or play music and sometimes even sing along.  Somehow, music seems to awaken something deep within them, often eliciting a smile even from those not fully awake.

Another rewarding part of volunteering is getting to know the caregivers who often rely on the volunteers for their own healing journey and respite from day to day care.  I often spend a bit of time chatting with them as well when I visit.  They truly need the companionship as much as the patients.

At the IPU, I really find peace in sitting with those close to death, focusing very hard on just being in the moment with them. I find it to be a very personal, spiritual, and deeply gratifying experience.

Of course, the volunteer experience would not be as rewarding without the support of the volunteer coordinator and her assistant.  They go above and beyond to assure that our needs and concerns are addressed and dealt with, always in a timely manner. They are an amazing team.

I feel so grateful for having found something that is truly fulfilling, offers so much in terms of teachable moments, and helps in the understanding and acceptance of death in a positive, affirming way.

by Kathy Little, Volunteer

Friday Five Helps Family Caregivers

The Friday Five is our weekly roundup of links to smart articles and helpful resources across the Web.

1. Check out the latest edition of our Living with Serious Illness newsletter. Our monthly e-newsletter focuses on offering helpful tips about family caregiving. Subscribe to the e-newsletter to receive it in your inbox every month.

2. It's not uncommon for a family member to reduce their work hours, or leave the workforce altogether, to care for an ailing family member. Reduce the economic strain on your family by looking into financial assistance or benefits for family caregivers. There are some federal and state programs in place that compensate family caregivers. The AARP Caregiving Resource Center can help get you started on your research.

3. If you were a fan of the essay, "How Doctors Die," then you might enjoy this piece from Shannon Brownlee for TIME Ideas. In her article, "What Doctors Know--and We Can Learn--About Dying," she looks at the issue from the perspective of advance directives, considers why doctors choose to "do everything" for a patient, and what she would choose for her own end of life. We need articles like these to further the discussion of how we prepare for the end of life in this country.

4. Here's a flyer from the Pima County Caregiver Education and Support Program. Tucson family caregivers might be interested in one of the program's support groups, practical skills classes, or find the respite program helpful.

5. Have you ever considered volunteering with a local organization? Casa de la Luz Hospice is honored to have more than 100 volunteers.  Together, these volunteers provide hours of service, offering companionship to patients, assisting with tasks in the office, and helping sit vigil with patients who are actively dying. Learn more about the volunteer program today.

The Wednesday Image: Arizona Bird-Watching

Arizona-Sonora Desert Museum

Image taken by Crystal Cannon

Hospice care teaches us not only how to approach death with dignity, but also how to appreciate life. The Wednesday Image is a weekly series of images that represent what we love and appreciate most about life in Tucson.

My Hospice Experience: A Member of the Orchestra

Carolyn Ancell, Certified Music Practitioner

I am a harpist. One part of my harp life is playing solo: for dinners, receptions, celebrations, services. But, the part of my harp life that is at the heart of the art is playing as a member of a sweet orchestra called hospice. In the hospice setting, my harp and I are part of an ensemble--medical, spiritual, social, familial, and administrative “instruments”--that creates a healing environment for those approaching the end of their lives.

Ten years ago, I read in PARABOLA magazine an ad for a national certification program called The Music for Healing and Transition Program. Two years later, after five intensive study modules and an internship at two local hospitals and Casa de la Luz Hospice’s Inpatient Unit (IPU) here in Tucson, I was officially a Certified Music Practitioner. Casa de la Luz hired me, and I began an amazing journey as a member of an “orchestra” that provides care, healing and support for terminally ill patients and their loved ones.

When I arrive for my shift at the IPU, I gather from the computer and from other members of the orchestra (nurses, CNAs, spiritual counselor, social worker) information about each of the admitted hospice patients (diagnosis, physical, emotional and mental condition, spirituality, relationships with family and friends). Armed with that information, I take my harp into the first room.

If the patient is awake and alert, he or she becomes a member of the orchestra! It gives me great joy when the patient says, “I would like music to help me sleep,” or “I like country western” or “classical.” And sometimes, after I begin playing, the patient will jump in and take the lead. For example, on Christmas Day, I began the first three patient visits with the same peaceful version of “Silent Night.” The first patient immediately began reminiscing and sharing her Christmas memories. I used my harp to support the mood of the patient’s memories throughout her storytelling.

In the second room, a Hispanic patient followed the song with tears in his eyes, then thanked me in Spanish, telling me he was feeling lonely this Christmas Day. So I shifted the direction of the music to “You’ll Never Walk Alone,” and then a few Spanish language songs.

In the third room, a patient’s family requested the harp music to soothe him while he slept. In the middle of “Silent Night,” the patient awoke and looked at me with surprise. I said, “I am not an angel, just a person, and I am here to play my harp for you because I love you.” He stared at me a few seconds longer, stated loudly and clearly, “Good!,” and went back to sleep. I shifted then to unfamiliar music to support his sleep without suggesting any particular images or memories.

Even when the patient is minimally- or non-responsive, he or she still indicates the choice and direction of my music. I sit close to the bed so I can watch and support, or help ease, the patient’s breath rhythm with the sound of the harp or soft vocal chanting. Often, the result is deeper, more relaxed breathing, a sigh, or other visible signs of relaxation.

If there are family members or friends present who ask for a particular song or kind of music for the patient, I try to find a way to include it appropriately, perhaps playing it slowly or softly, or stretching it to make it more arhythmic (which is helpful to a patient who is letting go of the regular rhythm of breath). Sometimes a family member or friend will begin to hum or sing along with the harp, joining the orchestra of love and support.

There are times as well that my harp music accompanies the patient to and through his or her final, fragile moments of life.

Even after the last harp tone is sounded, the orchestral work continues in charting or chronicling the visit, and perhaps leaving an in-house e-mail for the next day’s harpist.

It is an enormous privilege to be a member of the Casa de la Luz Hospice orchestra.

By Carolyn Ancell, Certified Music Practitioner

Friday Five: Great Reads for Healthcare Pros and Family Caregivers

The Friday Five is our weekly roundup of links to smart articles and helpful resources across the Web.

1. The hospice nurses I've met at Casa de la Luz are some of the kindest, funniest, most compassionate people I'll probably ever meet in my life. Day in and day out, they provide superior care to our patients and their families. For a taste of what the life of a hospice nurse is like, this article in the Columbia Missourian, "Patient work: a day in the life of a hospice nurse" offers a great glimpse inside.

2. I love this innovative idea about how to train medical students to be better physicians. This AARP article, "Creating Better Doctors" describes a program where medical school students voluntarily participate in a program called Learning by Living. The students are given a diagnosis, then live in a nursing home or assisted living setting, and gain firsthand experience at what it means to age in this country.

3. The National Family Caregivers Association offers a number of resources on their website, including this pamphlet called "Believe in Yourself: Take Charge of Your Life." The trifold brochure offers uplifting, motivational text about being a caregiver and offers suggestions to caregivers.

4. We always try to remember the difficulties that long-distance caregivers face. In today's day and age, it's not uncommon for a family to be living in different cities or even states (the elderly parents who moved to a warmer climate for retirement, the adult child living in the big city to pursue career opportunities, etc.). This article from the Strength for Caring website, "Helping from Far Away" is a thorough outline of tips on how to prepare for long-distance caregiving and suggestions on community agencies or services to reach out to for assistance. Articles such as these help you make sure that all of your bases are covered, making sure that your loved one is taken care of and giving you the peace you need to continue living your life.

5. We always encourage our patients to ask questions, to be a part of the care planning process. Don't be afraid of asking your doctor questions. The Agency for Healthcare Research and Quality has a Question Builder tool to assist you in preparing for your next doctor's appointment. The tool helps you build questions according to what type of medical appointment you have scheduled.

The Wednesday Image: Community

An attendee of the Beyond Tucson Health & Wellness Fair adds to the Beyond mural

Image taken by Carrie Bui, January 7, 2012

Explaining Death to Children

“Why can’t Grandpa talk to me?” “Is Uncle Mike going to die?” “Why do people die?” These are questions sometimes asked by children when their loved one is dying. It’s hard to know what to say to children when a loved one is nearing the end of life.

Children are perceptive and can tell that something is wrong, even when people try to hide it. Instead of trying to shelter children from the dying process, it’s best to include them in the process and take cues from them as to how much they want to be a part of the process.

Honesty is important. Children will have all kinds of questions. It is okay to reply “I don’t know” to some questions. It is best to use the words “dying” and “dead” instead of other terms that might confuse them. It’s best not to say that their loved one is “sick” or “sleeping” while they are nearing death. Phrases such as “she has gone away” or “he is on a trip” after the individual has died can create expectations for the loved one to come back. These phrases don’t express the finality of death.

It is also helpful to express your own emotions and not to hide them. Cry in front of your children. Share your feelings and encourage children to share theirs, too. If a child feels like crying, encourage them to do so. If they don’t, that is fine, too. Young children may want to express their emotions through drawing, writing, or storytelling. Children, as everyone, grieve in their own way and in their own time. They may talk about the death in ways that directly affect them. When a young child lost his father recently, he wanted to know “Can I have Daddy’s computer?”  That may sound cold to some, but to that child, it was something he could relate to. If Daddy is gone, he won’t need his computer any more.

Another way to assist children through the dying process is to include them in decisions. We would all agree that we want to “protect” our children from pain. However, death is a reality, and if they are sheltered from it, they may never have closure. If a child states that he or she wants to see their loved one, it should be their decision after hearing all the facts. A child should be told what the patient looks like and if the patient will respond to them or not. The child might be frightened by the presence of oxygen and other medical equipment, so it’s best to let them know what they’ll see and answer questions about it. If the child says that they don’t want to see the patient, don’t force them. Children may want to remember loved ones the way they were prior to illness.

Be patient, understanding, available, and hug them often, if they like physical touch. Be ready to talk to children and answer their questions on several occasions. Children will process their thoughts about dying over time, and they will do it differently based on their emotional maturity. They may not talk about it for a few days, and then have several questions throughout the next day.

Remember that grieving is a process. Whether you are young or old, grieving is painful, but it is important to experience it and not try to avoid it or shield someone from it. Allow grief to be expressed in healthy ways, and seek help from others if you or your children need it. Contact our bereavement department (520-544-9890 or info@casahospice.com)  for more information.

By Kim Bingham, Social Worker

Friday Five: Life, Caring, Healing

The Friday Five is our weekly roundup of links to smart articles and helpful resources across the Web.

1. A few times in previous Friday Five columns, I've recommended articles by Los Angeles Times writer Steve Lopez. He's been writing a series of columns related to issues of death and dying, issues that have hit close to home as he assists his aging father. In this audio interview on The Madeleine Brand Show, Lopez shares his personal story about his father and how he's started to consider quality of life. It's an especially insightful moment when he states that we're prolonging death, not life.

2. For the technologically connected caregiver, here's a great list of caregiving apps from a LeadingAge article. "Caregiving: There's an App for That" offers a list of apps that garnered some attention in 2011. It's a great variety of apps that include determining geographical location, keeping track of appointments and meds, reminder alerts, and even one for measuring blood glucose to manage diabetes.

3. I stumbled upon The Modern Mourner earlier this week. It's a blog dedicated to exploring ways to mourn and cherish memories of loved ones who have died. She states that she is "on a quest to find new ways to honor the lives of those we love." She elevates mourning into something lovely, looking at unique ways to repurpose the items of our loved ones, or pretty ways to capture memories.

4. At the beginning of December in a previous Friday Five, I shared a link to a Zocalo Public Square article entitled "How Doctors Die." It's still being passed around in hospice and palliative medicine circles online, and being widely discussed for its insightful look into the fact that most doctors would choose less intervention at the end of life for themselves, even if they continue to offer more intervention to their patients. Our favorite blog, The New Old Age Blog, followed up with the author of the article in this blog update, "When Doctors Face Death."

5. I have to admit, this one isn't very hospice related, but it is grief related, and personal to us as members of the Tucson community. This Sunday will mark the one-year anniversary of the January 8 shooting at a Gabrielle Giffords "Congress on Your Corner" event at a Safeway, just down the street from the administrative offices of Casa de la Luz Hospice. Some events have already taken place this week, and more events are scheduled throughout the coming weekend. They are events designed to not just honor the lives lost, but also events designed to honor the spirit of our city as we looked for ways to heal and celebrate the lives lost. Remembering January 8th honors the spirit of Tucson, the way a city came together in kindness to build an atmosphere of healing. We are honored to be part of this community.

The Wednesday Image: Meandering through the Tucson Mountains

Gates Pass, Tucson, AZ

Image taken by Carrie Bui

Hospice care teaches us not only how to approach death with dignity, but also how to appreciate life. The Wednesday Image is a weekly series of images that represent what we love and appreciate most about life in Tucson.

Serving Veterans in Hospice

During my time as a chaplain at Casa de la Luz Hospice, I have had the privilege of serving many veterans. It is an honor to participate in the Honoring Veterans Ceremonies where we present our patients who are veterans with a plaque and a blanket with the seal of the military branch  in which they served. I’ve also had the benefit of hearing some of the stories that these veterans have about their time in service.

Vets tell me funny stories, like one who was issued a weapon he had not been trained to fire. Fortunately, he never had to use it. Another told me about how even during the worst part of the Vietnam war, his friends found creative and funny ways to play pranks on each other.

Other vets sometimes shared darker moments of their experiences. One veteran of World War II shared with me something that had bothered him for decades. “I just wanted to unload that to someone before I die,” he told me.

Most veterans don’t talk about their combat experiences. One talked with me about decorations others in his unit had received. I asked if he had been decorated. “Oh,” he said, “I got the standard ribbons for making my bed and brushing my teeth.” When this gentleman passed, his family asked me to officiate at his funeral, and it was then I found out about the many medals he had received and the many acts of selfless service and bravery he had performed in dangerous situations.

One highly decorated patient was unable to speak, but I had read about him several years prior. His family was pleased that I had known of him through that publication, and talked with me about some of his military experiences that were not listed in the book.

As I did not serve in the military, sometimes I am ignorant of the customs and courtesies that are required when a vet is honored at a funeral. The honor guard members and base personnel have been helpful and supportive when I have worked with them, and the family members are always appreciative of the efforts made to honor their loved ones.

When I meet with these men and women, I am always aware of their service and sacrifice for all of us, and aware of the living history they provide. Most veterans downplay their service; some do not even want to be recognized, but to honor them at the end of their lives is a special privilege that is part of our daily service to our patients and their loved ones.

By Tom Saunders, Chaplain