Cover Story: Putting Care First

Feeling drained, confused—even scared and sad—are to be expected when a loved one approaches the end of life. You might also be overwhelmed, wondering what type and level of care they need, and where and how to get it. 

Hospice care was created decades ago specifically to meet this need and make the time remaining a more comfortable, even rewarding experience for both patients and families. It is a generous program, offering up to six months or more of services, support, and other benefits—typically paid for in full by Medicare—during the last stages of life. 

Despite the available six-month long benefit, the median hospice stay for Americans is just over two weeks. And the average time is even shorter in communities of color. Two weeks is just too short!  More time in hospice means more comfort, more help for families and caregivers, and more room for what matters. Hospice helps you have a better life, at the end of life.  

Capital Caring Health has been providing high-quality advanced illness care for patients and their families in the Washington, DC metropolitan region for more than 45 years. Since its founding, Capital Caring Health has endeavored to improve care for those facing life-limiting illnesses through direct support of patients and their families, public education, and advocacy. In 1982, the organization was instrumental in the passage of the historic hospice bill that increased access to care for the terminally ill. That same year, Capital Caring Health opened one of the first in-patient hospice care centers in the nation in Arlington, VA.

Today, Capital Caring Health is one of the nation’s oldest and largest non-profit providers of hospice and palliative care. The organization is proud to provide roughly $3 million in charitable care to families in need annually.

Care and Comfort

Hospice is a type of specialized medical care that provides compassionate physical, emotional, spiritual and practical support to people in the advanced stage of illness. Delivered by an interdisciplinary team of experts, hospice care is designed to relieve pain and other symptoms and to help both patients and families improve their quality of life, typically in the comfort and familiarity of their own homes.

A person can be in hospice for up to six months or even longer, depending upon the individual circumstances. To receive the greatest benefit, a patient should spend at least two to three months in hospice care.  Throughout hospice services, family members provide much of the hands-on care under the guidance and direction of hospice nurses and team members.

It is also important to note there are key differences in for-profit and nonprofit hospice providers. Instead of profits, nonprofit advanced illness and hospice organizations focus on ensuring care for every member of the community regardless of the complexity of the case or the individual’s ability to pay. Nonprofit hospice organizations also engage community volunteers to help provide additional comfort and support to patients and families.

“One common misconception is that Hospice staff are in your home around the clock. The fact is, outside of a short-term respite or acute crisis situation, we are not allowed to be the primary caregivers of patients,” explained Director of Admissions for Capital Caring Health Chelsey Primdahl. “Many people have never cared for a sick adult or a dying person. Hospice staff help teach people how to care for their loved ones in the way that only they can." 

Care to Promote Quality of Life

Palliative care is specialized medical care for people living with a serious illness. It focuses on relieving the symptoms, pain, and stress of illness, with the goal of improving quality of life for both the patient and family. Anyone of any age, suffering from a progressive illness can access palliative care at any point in their treatment. Palliative care can be provided independently or along with treatments aimed at curing the disease.

Care at Home

Capital Caring Health offers a unique program called Primary Care at Home that provides individuals with primary medical care in the comfort of their homes. The program serves seniors over 55 years of age who are home-limited and have an advanced illness or disability.

House calls are provided by doctors, nurse practitioners, and social workers who specialize in caring for older adults. Members of the care team use advanced mobile technology to perform in-home diagnostic tests. The care team is available around the clock to coordinate and provide needed care.

“The idea behind Primary Care at Home is to provide a continuum of care and help improve the quality of care for individuals as they age. Primary Care At Home removes barriers such as transportation that can keep people from accessing the critical care that they need and allows them the opportunity to stay connected to a comprehensive support team,” explained President and CEO of Capital Caring Health Tom Koutsoumpas.

Primary Care at Home uses the same team approach to care that hospice care applies. As home-limited patients age and need more care, the team is already in place to provide hospice care if or when it is needed.

“Hospice staff can do more work and do better work given more time to build a relationship,” said Chief Medical Officer Matt Kestenbaum, MD. “Instead of having a patient for just days or hours, using this model can help us serve patients for months or years. This approach to care is so much more fulfilling for the patients and the care providers.”

The Primary Care at Home program is currently serving 400 patients, who will be able to naturally transition to hospice services as needed.

Care after Loss

Grief is a very normal and human response to loss. Each person who loses a loved one responds and grieves in unique ways. There is no right or wrong way to grieve.

Capital Caring Health Grief Counselors provide individual counseling, education and support groups virtually and in-person to help family members understand the process of grieving and healthy ways to cope. Targeted resources are provided for families with children. These grief support services are extended to the families of Capital Caring Health patients, as well as to anyone in the community who has lost a loved one.

Rover Goes Robotic Patients reap the benefits of robotic pets

The words “robotic pet” may initially conjure images of metal dogs with remote controls designed as kids’ toys. They are not particularly cuddly and do not evoke emotions or connections. They are certainly not pets in any true sense of the word. However, modern robotic pets are changing those perceptions and improving the lives of their owners.

With the look of high-end stuffed animals and the technology to respond to human voices and touch, modern robotic pets are not mere distractions: they are companions.

Robotic pets are being deployed to help terminally ill adults and children. These robot rovers (and cats and birds) are helping to elicit emotional responses and inspiring genuine interactions from patients who are otherwise difficult to reach, including patients in the advanced stages of dementia.

Much like live animals, robotic pets have a calming and therapeutic impact. For patients who are largely disconnected from their caregivers or who may even be angry or confused, the pets can make an amazing difference in their daily demeanor. In many cases, having these pets gives patients a needed purpose. As the robotic pet responds to their attention with purrs, barks or chirps, patients appear more relaxed and more engaged.

“We hear from people constantly about how their loved one is a different person after getting a robotic pet,” explained Steve Cone, Chief of Communications, Marketing and Philanthropy for Capital Caring Health. “We have people telling us that their mom has the robotic cat with her 24 hours a day, or that their dad is no longer angry and confused now that he has a robotic dog.”

A Focus on Pets

As part of their therapeutic programs, Capital Caring Health has long supported the Pet Services Program to help patients care for their own pets or to bring visiting pets to patients. However, the scope of that program is naturally limited by the amount of pets who are specially trained to visit ill patients or bereaved family members. It is also challenging to help aging patients care for their own pets, since there are daily obligations.

While robotic pets have been around for some time, they were previously cost prohibitive. Now robotics pets are available for as low as $150 per pet. Capital Caring Health is able to provide the pets free of charge to anyone who cannot afford them with support from their generous donors.

For elderly people who are living in isolation or dementia sufferers who are unable to physically or financially care for a pet, robotic pets can be a low-cost way to make a significant impact on quality of life.

“The vast majority of the patients we provide pets to have dementia,” Cone said. “The patients often name the pups or cats for a real pet that they somehow remember. There is so much real affection for and attachment to these pets.”

A Partnership to Provide Companionship

Capital Caring Health recently began partnering with Insight Memory Care to provide robotic pets for individuals with dementia in their adult day care program. “They provide an enormous amount of comfort to our participants,” explained Executive Director of Insight Memory Care Anita Irvin. “We use the pets at specific times of the day when our participants may be stressed or anxious, such as during transition times. The pets help calm them down and give them a sense of purpose.”

At Insight, the participants have quickly formed attachments to the pets and are much more engaged when they are around. “When the participants pet the animal, it responds with a bark or a purr. Seeing the animal respond back to them really heightens the connection,” Irvin said. “We’ve seen positive responses even in our late-stage dementia program where they may only be able to focus on the pet for two minutes, but that interaction still makes a world of difference in their demeanor.”

Through their charitable efforts, Capital Caring Health was able to donate 10 of the robotic pets to Insight. They are also working to help other not-for-profit hospice and advanced illness groups throughout the country learn about the benefits of robotic pets.

“We already make pets available to anyone in our service area suffering from dementia who cannot afford one,” Cone said. “We are working to help other organizations set up robotic pet programs as well, so we can help more dementia patients get these pets that provide so much comfort.”

Helping Dementia Patients and Promoting Awareness

Cone pointed out that the enormous impact of dementia on families and caregivers is often underestimated. Dementia is now the third leading cause of death in the U.S. after heart disease and cancer, and the numbers continue to grow. At Capital Caring Health, one of the 10 largest hospice organizations nationwide, half of their 2,800-3,000 daily patients have some form of dementia.

In addition to being a therapeutic tool for their growing number of dementia patients, Capital Caring Health has also discovered that the pets are an entry point to get families thinking and talking about hospice care. Unfortunately, most patients in America only enter hospice for the last two weeks of their life. However, so much more could be done for these patients and their families to improve the quality of life remaining if they entered hospice care earlier.

“Hospice care is something that too many people really don’t want to think about,” explained Cone. “But when you lead with the pets and focus on helping an individual who is suffering from dementia, you get a completely different reaction. This program has helped us reach people who otherwise would not consider our services. It has also helped us get donations from people who would otherwise not support us. This is a great opportunity to introduce people to everything that Capital Caring Health and other advanced illness providers can offer.”