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.

Monday, July 30, 2012

Hospice Care: The Role of the Primary Caregiver

When you are admitted to our hospice program, you will be asked to identify a person as your primary caregiver. If you are living at home, your primary caregiver is responsible for providing your daily care, with assistance from the hospice team. If you are living in another care setting, your primary caregiver is consulted regularly regarding your care.

The role of primary caregiver is very important. This role can be demanding, but also deeply rewarding. Primary caregivers actively participate in meeting their loved one's needs, adding greatly to their comfort and quality of life.

Your primary caregiver ensures that care is provided to you 24 hours a day, as needed. Often, this means sharing the responsibility of care with other family members, friends, or hired caregivers. Your hospice team does not provide 24-hour care, and cannot take the place of family and friends.

Your primary caregiver is considered a member of the hospice team. Team members depend upon her/his observations of your daily progress and your needs. S/he is included in decision making regarding your care. When the hospice team makes regularly scheduled visits to your home, they teach your primary caregiver how to provide your physical care as well as extend emotional and spiritual support to both you and her/him.

In addition to scheduled visits, Casa de la Luz Hospice staff is available 24 hours a day, seven days a week. A nurse is always available to speak with you by phone, or to visit if needed. In the case of an emergency, or a change in your condition, the primary caregiver should always call Casa de la Luz Hospice. A Casa nurse will assess your situation promptly, and extend support as needed.

At Casa we value the commitment primary caregivers make to their loved ones, and we will do our very best to provide caregivers with the support and resources they need.

If you are a family caregiver seeking support in the Tucson area, visit our sponsored website, Living with Serious Illness for a list of community resources. For those not in Tucson, try contacting your local area agency on aging.

Adapted from The Care Companion, a Casa de la Luz Hospice publication

Friday, July 27, 2012

Friday Five: From Seriously Ill to Death and Dying

1. There was a well-written, poignant blog entry this week on the American Journal of Nursing's blog, Off the Charts. Editor Amy M. Collins writes about her first personal experience with death in "Talking About Death: Not Nice, But Necessary," and while we recognize this is one person's personal anecdote, we can't help but worry how many more personal anecdotes there are similar to hers.
When it comes to serious illness, to deciding how far to go with treatment, families need to have the conversation with one another, and physicians and other healthcare professionals need to be available to support patients and families. Just like Amy asking the doctor about what to do next in the hallway, we know other patients are looking to their physicians for guidance. Let's give them the guidance they need to make the right decisions for them.

2. We like to say that volunteers are the heart of hospice, and stories such as this, about threshold choirs, remind us how true that statement is. "Unique choir ministers to patients at the threshold between life and death" is a great story about the rise of female, non-denominational, a capella choirs that sing to hospice patients. We've always supported music therapy, and we believe in the power of music to offer comfort and healing to patients at the end of life.

3. We appreciate the growing attention by the public of Alzheimer's and other dementia diseases, but we know there are still lots of questions out there. Caregivers of individuals with Alzheimer's disease may find this Ask the Expert video segment from the Alzheimer's Association helpful. The questions come from real-life family caregivers like yourself.

4. We think this Minnesota program is on the right track, and will hopefully serve as a model for healthcare providers across the country. "Making decisions for loved one's family days" is about Minnesota's Honoring Choices program, which is designed to offer patients and families trained facilitators who help them discuss the level of healthcare intervention they might want, in case of accident or serious illness.

5. Caregiving can be rewarding, as you give back to the parents who cared for you or lovingly stand by your spouse, through sickness and health. But caregiving is also emotionally taxing, as you cut back your work hours or eventually quit your job altogether, worrying about finances, and keeping track of medications and doctors and appointments. Family caregivers are at high risk for issues such as depression, and it's important to recognize the early signs.  "When a family caregiver suffers from depression, there are two people at risk - the family caregiver and the family member or friend for whom she or he cares," points out the National Family Caregivers Association website. Learn more about caregiver depression from NFCA.

Wednesday, July 25, 2012

The Wednesday Image: Arizona Scenery

Catalina State Park
Image taken by Sally Saunders

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 representing what we love and appreciate most about life in Tucson.

Monday, July 23, 2012

Hospice Care Team: The Role of Your Nurse and CNA

As a Casa de la Luz Hospice patient, you will be assigned an RN Case Manager and a Certified Nursing Assistant. They will help care for you during your end of life journey. Here is what you can expect from your RN case manager and your certified nursing assistant (also referred to as CNA or home health aide).

The role of the case manager is to assess and manage a patient’s care needs. He/she is a registered nurse who acts as the eyes and ears of the hospice physician or attending physician. He/she works to treat distressing symptoms and improve the patient’s comfort. Our case managers have strong assessment skills, are critical thinkers, and have compassion and empathy for our patients and their loved ones. The case manager will work with the rest of the hospice team to fulfill yours or your loved one’s care needs at the end of life.

The RN case manager is also responsible for educating the patient, the patient’s loved ones, and the patient’s primary caregiver(s) on the signs and symptoms of the dying process. He/she will maintain communication with the loved ones and caregivers about the patient’s status and discuss any changes in the patient’s health. They are also responsible for determining the effectiveness of the prescribed medications for symptom management. The RN will also develop a plan of care, based on the patient’s needs, for the home health aide to follow.

Casa de la Luz employs certified nursing assistants to provide personal care to our patients. Personal care can include bathing, back rubs, oral hygiene, shampoos, dressing, assisting with transfers, skin care, and changing bed linens. The CNA may also feed the client and offer companionship. Our nursing assistants report on a patient’s condition, including significant changes, to the case manager. Patients often feel more at ease with the home health aide than other members of the hospice team.

Our hospice staff is here to guide you and support you through the end of life journey. We strive to work with our patients and their loved ones to ensure you are comforted and supported at this time of life. 

For Tucson residents, if you or someone you love is facing the end of life and could use the support of hospice services, call Casa de la Luz at 520-544-9890. For individuals seeking hospice care outside of Pima County, visit the National Hospice and Palliative Care Organization’s website to search for providers in your area.

by Richelle Nixon, RN, CNA Supervisor

Friday, July 20, 2012

Friday Five: Things We Read This Week

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

1. We were so pleased to see the Los Angeles Times printed a wonderful op-ed piece by Dr. Ira Byock, a leading physician in hospice and palliative care, this week. We believe that articles such as these, "Rational healthcare, not rationing," encourage discussion about how to change the way we treat the dying in our country. And, we believe that with more open discussion, more individuals will have their end of life wishes fulfilled.

2. Educating healthcare professionals about the end of life process is a key component to changing how healthcare helps individuals and families approach dying. We liked this article in The Globe and Mail, "Teaching doctors a new approach to the end of life process," about how a Toronto hospital is taking a new approach. They've created a day-long session featuring actors and role-play situations to teach training doctors how to handle delicate, end of life conversations with family members.

3. In our stumblings through the Internet, seeking people's stories about dying and death, we learned about a 30-year-old who recently died and left three wishes in his will. His three wishes were: to repay his parents for any debts he owed them, to give money to a homeless individual, and to leave a $500 tip for an underappreciated waiter or waitress. His family raised $500, and fulfilled Aaron's last wish. The story's gone viral, and they've now received more than $10,000, enough to change the lives of 23 individuals. That is an amazing legacy.

4. Family caregivers are often thrust into this role unexpectedly and without experience, and so it's understandable that you might have a lot of questions about caregiving. The always helpful AARP is hosting a live online chat Tuesday, July 24 with Elinor Ginzler, an expert on aging issues. You can submit questions in advance about juggling caregiving responsibilities or how to best provide care, or you can just join in the with the chat at 2 p.m. EST.

5. Are you a caregiver for a veteran? Support is now available to caregivers of veterans through the Dept. of Veterans Affairs. Visit the VA Caregiver Support website to read other caregivers' stories, find helpful resources and tip sheets, and contact information for your local Caregiver Support Coordinator.

Wednesday, July 18, 2012

The Wednesday Image: Flowers Like Sunshine

Tucson, Arizona
Image taken by Crystal Cannon

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

Monday, July 16, 2012

Hospice Care, By the Numbers

About a week ago I was picking up a takeout lunch from a local Chinese restaurant. My regular server came over and started chatting with me and asked where I work. I explained that I worked for Casa de la Luz Hospice, just down the street from the restaurant.

The woman didn’t know what hospice was so I spent a couple minutes explaining the service to her. This is a pretty typical conversation for me when asked what I do for a living. Most people only have a vague idea of what hospice does, and most of them seem to think care only happens in a hospice facility. Perhaps you’re one of these people, unsure what hospice care provides or even where it happens.

So, what are some facts about hospice care?

It’s a holistic method of care that focuses on an individual’s physical, emotional, and spiritual needs at the end of life. The emphasis is on offering care and comfort, not cures. It’s a benefit that’s covered by Medicare and most insurance providers. Hospice care offers support and education about the dying process to a patient’s loved ones. 

“Typically, a family member serves as the primary caregiver, and when appropriate, helps make decisions for the terminally ill individual. Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. Hospice staff is on-call 24 hours a day, seven days a week,” according to the National Hospice and Palliative Care Organization’s 2011 edition of “NHPCO Facts and Figures: Hospice Care in America.”

In 2010, 66.7% of hospice patients received services at home. Other patients were served in either a hospice inpatient facility or an acute care hospital. More than 1.5 million people received hospice services in 2010. 

A Duke University study released in 2007 found that hospice care reduced Medicare spending by an average of $2,309 per person. So not only does hospice care help fulfill the wishes of most dying individuals to spend their final days at home, but it’s also a financial benefit to Medicare. 

Unfortunately, like the woman at the Chinese restaurant, most individuals don’t know what hospice is or misunderstand it. As a result, individuals are referred to hospice very late in their illnesses. NHPCO reports that half of hospice patients in 2009 received care for less than three weeks, and in 2010, approximately 35% of patients died or were discharged within seven days of admission to hospice.
Medicare Hospice Benefit eligibility rules state that a person is eligible for hospice if they have six months or less to live (if the illness runs its normal course). It is a disappointment then that so many hospice patients are served for a week or less, and many more for less than a month.

If you are in the Tucson area, and interested in learning more about how hospice care can help you and your loved one, please visit our website at www.casahospice.com or call 520-544-9890. 

To find a hospice provider in your area, visit the NationalHospice & Palliative Care Organization website.

by Carrie Bui, Communications Specialist

Friday, July 13, 2012

Friday Five Considers the Dying Process

The Friday Five is our weekly roundup of links to smart articles and helpful resources for healthcare professionals, family caregivers of terminally ill individuals, and those seeking information about hospice care and grief support.

1. This article, "San Francisco doctors striving to steer dying patients out of ER, into hospice" from the San Francisco Examiner is one that we hope gains attention from ER doctors around the country. Given that so many individuals have stated as their wishes to die comfortably at home, we as healthcare professionals should be striving to fulfill the patient's wishes if the care options are available. We hope that physicians refer to hospice when a patient comes into the ER and is dying as opposed to prescribing treatments that would only make the patient's end of days harder. However, we know this isn't always the case. But, we're encouraged by the news that these San Francisco physicians are attempting to change that.

2. This was a compelling read from the Courier-Journal, "End-of-life care raises tough questions for families, society," because of the very personal family story featured and the obvious struggle for these siblings in making decisions regarding their mom's care. We think stories like these offer a human face to what can sometimes be an abstract, distant concept for many people. You might not consider end of life options until you're in the midst of an end of life issue, but the point is, we need to know our options and our wishes ahead of time. By filling out an advance directive and having the conversation with your family, you will hopefully lessen the impact of the pain and conflict that can occur at the end of life.

3. Hospice volunteers are an amazing part of the hospice interdisciplinary team. They help support the hospice staff, provide companionship to patients, and respite for caregivers. They are compassionate, dedicated individuals who provide a comforting presence. This is a wonderful profile from The Frederick News-Post, "Hospice volunteer finds ways to celebrate life in the dying," about why one woman was called to hospice volunteering and gives a better understanding of what it means to be volunteer with dying individuals.

4. We know that for many family caregivers out there, this is your first time in this type of situation. You're relying on others provide you with guidance, links to information, phone numbers to community resources, etc. You might not even be aware of all of the community resources that coult meet your needs. Readers in Tucson and the surrounding areas will welcome this directory of community programs on our calendar page. If we can offer you more information, we'd be happy to speak with you.

5. When it comes to dealing with the death of a loved one, it can be helpful to have a supportive community who understands what you're feeling. Share your grief with others through Hello Grief, a website where people can share and learn about grief and loss.

Wednesday, July 11, 2012

The Wednesday Image: Independent Sunset

Sunset at Dove Mountain
Taken July 4, 2012 in Marana, Arizona
Image taken by Brianne Pekar

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.

Monday, July 9, 2012

Three More Things to Know About Hospice Care

Click here to read the first part of this series, Three Things to Know About Hospice Care.

Hospice care is a covered Medicare benefit (and a benefit of most other insurances).

The Medicare Hospice Benefit covers the cost of hospice care, medical equipment, supplies, and medications related to the terminal illness, inpatient care, and respite care. An individual is deemed eligible for the Medicare Hospice Benefit if he/she meets all of the following conditions (as determined by Medicare and as stated in the Medicare Hospice Benefit booklet distributed by the Centers for Medicare and Medicaid Services): 
  • Eligible for Medicare Part A
  •  The patient’s doctor and the hospice medical director certify that a patient is terminally ill and has six months or less to live, if the disease runs its normal course.
  • The patient signs a statement choosing hospice care instead of other procedures to treat the terminal illness.
  • Care is provided by a Medicare-approved hospice program.
  • If you are interested in pursuing hospice care, and are covered by another insurance, contact your insurance provider or a local hospice provider to learn what your insurance provides in terms of hospice care coverage.
Hospice patients and loved ones are provided care and support by an interdisciplinary team of professionals with expertise in the dying process.

Hospice care uses a holistic model of care to address the physical, emotional, and spiritual needs of a patient and their loved ones. The interdisciplinary team is comprised of the physician, the nurse case manager, a social worker, a chaplain, a home health aide, volunteers, specialty therapists, a dietician, and a bereavement counselor. These individuals are experts in end of life care. Together, they offer solutions to managing symptoms, guidance on making final arrangements or accessing benefits, emotional support, education on the dying process, assistance with personal care such as bathing and grooming, and grief support for loved ones after the patient’s death. 

The team members will visit you on a regular basis, and the frequency is determined by your care needs and the hospice plan of care.

There is no time limit for hospice care. 

Hospice care is provided in benefit periods. Medicare patients can receive hospice care for two 90-day periods followed by an unlimited number of 60-day periods. At the end of each period, a hospice physician must re-certify that you are terminally ill and therefore, still eligible for hospice care. It is possible for a patient’s conditions and symptoms to stabilize or go into remission while on hospice care. If a patient stabilizes on hospice care, he/she is discharged from hospice services. Patients can be re-certified for hospice care again if his/her health begins to decline and a doctor believes he/she meets the requirements for hospice. 

You can search for a hospice provider in your area using the National Hospice and Palliative Care Organization’s website. If you are in need of hospice services in Tucson, AZ, you can contact Casa de la Luz Hospice by calling 520-544-9890 or e-mailing info@casahospice.com.

By Carrie Bui, Communications Specialist

Friday, July 6, 2012

Friday Five Thinks About End of Life Care

The Friday Five is our weekly roundup of links to smart articles and helpful resources for family caregivers or individuals interested in learning more about hospice care and the end of life process.

1. We're always happy to see when a hospice worker is recognized for their efforts in assisting patients and families during the dying process. This article from the Clifton Journal on northjersey.com, "A song for some unsung hospice heroes" was a beautifully written piece about a Clifton, NJ hospice. If you're unfamiliar with hospice care, articles such as these can help inform you about the type of care a hospice can provide you, as a patient or as a loved one.

2. Hospice professionals have probably already come across this article, "With boomers coming, hospice industry diversifies." It's been making the rounds of newspapers around the country, and speculates a little on how baby boomers will change end of life care. Hospices need to be prepared to care for this large, aging population. For that matter, we think the boomers will change the issues of aging, elder care, and the greater healthcare industry.

3. We know that terminally ill individuals experience a more positive dying experience with hospice care, but it always helps to see a study support that knowledge. "More visits from hospice may allow death at home" helps summarize a recent study that looked at where people wanted to die (3/4 of people said home) and the factors that influenced their chances of dying at home.

4. Government regulations, insurance fine print, and the variety of community resources can be difficult for anyone to navigate. If you're a family caregiver, learn what benefits are available to your loved one by using BenefitsCheckUp. It's a free service that comes from the National Council on Aging, and will help you find benefits that can save you money and help cover the cost of everyday expenses, including healthcare, medications, food, utilities, and more.

5. Don't be afraid to seek support from other individuals who are going through a similar experience as you. Our sponsored site, Living with Serious Illness, offers a great list of online support group topics. Online groups can be very helpful for those with a busy schedule and are looking for support with flexible time.

Wednesday, July 4, 2012

The Wednesday Image: Remembering Tucson History

The ruins of Fort Lowell Hospital at Fort Lowell Park, 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.

Monday, July 2, 2012

Casa de la Luz Hospice Celebrates New Campus

Dr. David Jaskar, Casa's Medical Director, cuts the ribbon.

Casa de la Luz Hospice cut the ribbon on its new campus yesterday afternoon with the help of Rep. Steve Farley, Rep. Vic Williams, Oro Valley Mayor Satish Hiremath and Oro Valley Vice Mayor Lou Waters. They also welcomed guests from the Oro Valley Town Council as well as representatives from the offices of Sen. John McCain, Rep. Ron Barber, and Rep. Raul Grijalva.

More than 300 people attended the ribbon cutting and open house reception, including community members, hospice employees, and hospice volunteers. Guests enjoyed tours through the Casa de la Luz Hospice buildings, as well as wine tastings from three Southern Arizona wineries and appetizers from Blue House Catering. The wineries at the event were Lightning Ridge Cellars, Callaghan Vineyards, and Arizona Hops & Vines

The new campus marks a significant milestone in the hospice’s 14-year history. Tucsonans Lynette Jaramillo and Agnes C. Poore founded the hospice in 1998, and the organization has since grown to serve the most hospice patients in Pima County. Casa de la Luz employs almost 200 individuals and has more than 100 active volunteers.

“We’re all enjoying being on one campus again,” said Jaramillo, chief executive officer. “The new campus symbolizes Casa’s growth over the years as a company, and our commitment to serving our patients and community.”

The project was completed in partnership with Rob Caylor of Caylor Construction, Frank Mascia of CDG Architects, and interior decorater Ruthann Melzer.

“This campus gives us the space to support our staff and to encourage the hospice team philosophy,” said Poore, chief clinical officer. “This new campus gives us the opportunity to grow our organization and our ability to provide superior end of life care to our community.”