Welcome to House of Light, a blog produced and managed by the staff of Casa de la Luz Hospice. Casa de la Luz ("house of light" in Spanish) is a locally owned and operated hospice, serving the city and surrounding communities of Tucson, Arizona. Through this blog, we hope to offer education, information, and support about caregiving and hospice care to terminally ill patients and their loved ones. For more information, visit the contact us page.

Friday, July 29, 2011

Friday Five

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

1. Life Before Death is the name of the YouTube channel where you can watch short documentary videos about the global crisis of untreated pain, and about how palliative care services can change these people's lives. It's a wonderfully global look at a universal health issue.

2. A new study from The New York Times suggests what you might have already guessed: men grieve differently than women. "While women who lose their husbands often speak of feeling abandoned or deserted, widowers tend to experience the loss 'as one of dismemberment, as if they had lost something that kept them organized and whole,' Michael Caserta, chairman of the Center for Healthy Aging at the University of Utah, said by e-mail." If you're in Tucson and are looking for grief support groups, please contact Casa de la Luz Hospice at 520-544-9890.

3. We Honor Veterans is a program near and dear to our hearts. Thanks to the National Hospice and Palliative Care Organization and the Department of Veterans Affairs for partnering together and looking for better ways to serve veteran patients around the country.

4. Articles such as Aging Well: Facing the Fact of Mortality help expand and further the national conversation about planning for death. If we are willing to plan and discuss death, we can be ready when the time comes, and we can allow ourselves and our loved ones a more peaceful death.

5. It happens to all of us. You're at a doctor's visit, and at the end of the evaluation, the doctor asks if you have any questions and your mind goes blank. You feel like you must have questions, but you don't know what any of them are. Living with Serious Illness presents a guide for Talking with Your Doctor, designed to help you prepare for your appointment and offers suggested questions for you, as well as provides additional explanation about getting a second opinion and information for health care planning.

Wednesday, July 27, 2011

The Wednesday Image: Arizona Sunsets

Image taken by Carol Heil from her backyard

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

Monday, July 25, 2011

The Hospice Interdisciplinary Team

Facing the end of life for many is not purely physical; for most of us it is a physical, emotional, and spiritual journey. Hospice recognizes this fact, and supports the patient as a whole being, as well as offers support to families and loved ones. That support is offered by an interdisciplinary team, a group of hospice professionals who combine their individual knowledge and skills to offer patients care, support, and resources.

The nurse case manager assesses patient needs and coordinates care of the hospice team. Your case manager works closely with the hospice physician to determine patient needs and to decide how symptoms should be managed.  The case manager implements a comfort care plan that focuses on pain management and symptom control. The case manager provides education to the patient and the family, teaching them how to best care for the patient’s needs. The physician is also responsible for certifying that a patient is hospice appropriate, following the guidelines set by the Medicare Hospice Benefit.

The end of life is a highly emotional period of time, for the patient and their loved ones, and there are also often preparations that need to be made. Social workers are available to assist with social, emotional, and/or financial needs. They counsel and support the patient and family, are able to provide resources for funeral planning or financial assistance, and offer initial grief support. 

Spiritual counselors are also available to assess the patient’s and family’s spiritual needs, if any. They can provide spiritual counseling, refer the patient and family to community clergy, and also provide memorial and funeral preparation assistance. Counselors respect the individual religious backgrounds of a patient and family, and are not there to pass judgment. A patient and family might even choose to not utilize the counselor’s spiritual knowledge, but the counselor is happy to visit as a listener and companion.

Personal care needs can be fulfilled with the assistance of a home health aide. Basic needs, such as bathing and grooming, can be difficult, and the aide can provide the professional expertise and assistance that is needed to maintain personal hygiene. The home health aide also communicates any patient needs to the rest of the care team.

Some patients and families also choose to have a volunteer visit regularly. Volunteers offer companionship to the patient and respite for loved ones. They are happy to just sit with a patient as a comforting presence, or if the patient is up to it, they might offer friendly conversation, be a games partner, or participate in mutual interests and hobbies together. 

After the patient passes, a bereavement counselor is available for the family. Casa de la Luz Hospice follows the family for 13 months after the patient’s death, and grief support groups are offered on a regular basis. Individual counseling is also available.

At the end of life, you don’t have to be alone.

By Carrie Bui, Communications Specialist

Friday, July 22, 2011

Friday Five

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

1. AARP Bulletin shared a story this week about The High Cost of Caregiving. We can only hope it's an eye-opener to the rest of the country and the powers that be. It is financially, physically, and emotionally taxing to be a family caregiver, and yet people around the country are doing it every day.

2. You know you need to have a discussion about the end of life with your loved ones. You know you need to talk to your loved ones about how much medical intervention you want, how you want to be cared for, the place where you hope to live out your last days. But you don't know where to begin. The Engage with Grace project offers you one PowerPoint slide to help start your discussion today.

3. Watch The Last Chapter, a documentary sponsored by the Jewish Healthcare Foundation, and then share it with others. Taking control of end of life decision-making before a crisis can lead to a better end of life.

4. It's stressful caring for a loved one with a serious illness. We try to remind caregivers often that they need to remember to care for themselves as well as their loved ones. Here are Mayo Clinic's Tips for Taking Care of Yourself.

5. There are a lot of people fighting for attention on Capitol Hill, but it's easier to be heard when you're part of a group. If you support hospice care and want your politicians to do the same, join Hospice Action Network advocates as they work to preserve and expand hospice care in America.

Wednesday, July 20, 2011

The Wednesday Image: A Family of Quail

Image taken by Crystal Cannon in the parking lot of Casa de la Luz Hospice's office

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

Monday, July 18, 2011

What is hospice?

If I begin to answer that question with something sentimental like “hospice is love” you will all click away from such a trite saying.  To educate my audience, I could attempt a dry dictionary explanation of hospice,  like discussion of methods and practices…are you clicking away yet?

Hospice is a balance between the real expression of loving, supportive care and the rational, practical treatment of someone with a terminal illness.  Love is all around.  The patient emanates love and affection for the ones they are leaving.  In turn, the family’s and friends’ love embraces and comforts the dying.  And, sometimes, a patient doesn’t have a family support system.  In these cases, hospice can step in and provide not only services, but companionship.

Holding all of these systems together is a team of professional hospice workers:  nurses, CNAs, social workers, spiritual counselors, along with all the administrative and volunteer support they need to support our patients.  These professionals weave their blanket of cohesiveness, comforting all with warm hearts and kind hands, combined with experience and knowledge of processes and available services.  The hospice goal is to provide a dignified and harmonious passage from life to death.

And when death comes, what do you do?  Who do you call?  How do you get help to figure out the next step?  Hospice workers prepare the family and loved ones for this eventuality.  They are there to make arrangements and help you figure it all out.  They come with compassion and resources.

When aggressive, curative care is no longer desired, hospice can offer comfort care to the patient as well as support loved ones.  The hospice professional is trained to treat the whole patient, not just the organ that is diseased or the part that is malfunctioning but also the emotional distress and the spiritual cravings that surface when death is near.  Hospice professionals will educate the family on what to expect as their loved one progresses through this difficult time.  Social workers help families under stress – providing emotional support, dealing with family conflicts, assisting with difficult situations.  Spiritual counselors can be a connection to a faith community while also offering emotional and spiritual support.  Volunteers are available to sit with the patients and keep them company or to provide respite for caregivers.  And, hospice is there after the death, with ongoing grief counseling and support groups.

The end of life is a hard time for the family; it’s scary and new and terribly sad.  But hospice workers recognize all that and strive to make the terrible time easier, calmer, more respectful.  Years of experience have taught hospice workers how to compassionately care for someone on the last leg of their earthly journey, ensuring a safe passage and making the experience less difficult on the ones left behind.

 It is love.  

by Carolyn Lytle, HR Assistant

Friday, July 15, 2011

Friday Five

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

1. Don Schumacher, president and CEO of National Hospice and Palliative Care Organization, responded to an article in Georgia Health News about the rising cost of hospice care. The article, The truth behind the hospice numbers, eloquently explains how hospices have served an increasing number of patients since 2000, and how the majority of hospices in this country, for-profit and not-for-profit, provide cost-efficient quality care. It's important for people to realize that the faults of a few should not be considered the faults of many.

2. Are you interested in expanding your knowledge about end of life care? Join the Casa de la Luz Foundation at their 11th annual end of life conference. Dr. Rachel Naomi Remen is this year's keynote speaker for "Listen, Learn, Live: Stories of Life, Mysteries of Death."

3. When someone has served time in the military, their family serves too. The VA recognizes that there are many family caregivers who are caring for our soldiers, and offers support to those caregivers as well as veterans. Learn more about the support available through VA Caregiver Support.

4. It's one thing to read about something, but it's quite another to watch it. This trailer for Serving Life is just a glimpse at how a Louisiana prison hospice serves the dying and the living. The full documentary airs July 28 on the Oprah Winfrey Network.

5. A call for blood donations has been going out all week from the Red Cross of Southern Arizona. There is a shortage right now. Please make an appointment today, and know your blood donation can help save lives.

Wednesday, July 13, 2011

The Wednesday Image: Monsoon Storm

Image taken by Brianne Pekar, July 7 2011, Central Tucson

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

Monday, July 11, 2011

A Blog Introduction

Before launching into a blog, I like to give readers the chance to get to know who it is they’re reading. It seems like the best way for us to get to know one another, and the best way for you to know what to expect from this blog.

House of Light is a blog produced by members of Casa de la Luz Hospice. You will get to know the members of our team as they share their individual areas of expertise in end of life care, from the social worker perspective to the spiritual counselor perspective to the nurse’s perspective. 

We often come across patients, families, and friends who know very little about how hospice care works. Many might look at hospice as committing yourself, or your loved one, to a death sentence. Through our blog entries, and the conversations they inspire, we hope to encourage a different perspective about hospice services and dying. I love the way our social worker Lisa Daniels put it, “We can give them the opportunity to live their life while on hospice.”

Casa de la Luz Hospice was founded in 1998 in Tucson, Arizona by two local women, Lynette Jaramillo and Agnes Poore. Casa de la Luz means “house of light” in Spanish, and “Our mission is to provide superior care to patients and their loved ones, so that they may complete their mission on this earth in comfort, dignity, and harmony.” This is a mission that Lynette and Agnes, and the entire Casa de la Luz Hospice staff strive to accomplish each day. 

In order to fulfill our patients’ needs, and the needs of their loved ones, our services include arranging scheduled visits at home by our hospice care team; answering your calls in crisis situations, 24 hours a day, 7 days a week; and providing grief support to loved ones after the patient’s death.

Every Monday, you can count on reading an entry from a Casa de la Luz Hospice team member. We hope to offer you information and assistance in issues of grief and loss, caregiving, death and dying, and help you understand what hospice care provides. We hope that you will keep reading every week, that you will learn something new, that we will be able to inspire you.

-Carrie Bui,  Communications Specialist