In the News

Hospice has changed, and patients and families are better for it

Boston Globe

After 40 years of treating patients nearing the end of life, Care Dimensions is redefining what hospice means.

By Robin Catalano | April 30, 2018

Army veteran Ken “Woody” Wooldridge was an active, wisecracking septuagenarian when he was diagnosed with an autoimmune disorder that caused nonmalignant masses to develop in his lungs. Coupled with his chronic obstructive pulmonary disease, this new diagnosis made Woody’s breathing difficult and left his ability to live independently in doubt.

Following a string of hospital admissions, Woody and his daughter, Sandy Wooldridge, an ICU nurse, were referred to the nonprofit Care Dimensions, the largest hospice and palliative care provider in Massachusetts, which recently opened an 18-bed Hospice House in Lincoln. That word—hospice—alarmed Sandy, who knew her father was sick, but didn’t feel like he was dying.

“At first, I wasn’t sure it made sense,” says Sandy. “I’m in the medical field and I didn’t even realize hospice is for more than just people who are close to dying. It’s also for people with advanced disease or chronic, irreversible health issues that just want to live a better life.”

For Woody and Sandy, the switch to hospice was transformative.

The regular in-home medical attention meant Woody had expert help when he needed it, and Sandy didn’t have to live in a constant state of worry. Woody handled his daily self-care with confidence—and even continued visiting the local Dunkin’ Donuts with friends. He lived nearly two years after starting with Care Dimensions.

Embracing the taboo talk

While hospice has traditionally been associated with making cancer patients comfortable during their final days, it goes far beyond morphine drips and hand-holding. Care Dimensions, which is celebrating its 40th anniversary this year, addresses the many physical and emotional needs of patients with a wide range of terminal illnesses, from congestive heart failure to dementia, Parkinson’s, pediatric illnesses, or, like Woody, respiratory disorders.

“Hospice is a broader, more integrated approach to medical care,” says Dr. Stephanie Patel, Care Dimensions’ chief medical officer. “It looks at the big picture: the history of the patient’s medical illness, how it’s affecting their life, and how it’s affecting their family and caregivers. We create a plan to improve the quality of their care and life all around, and we come to them—home, nursing facility, assisted living, hospital, veterans home—wherever they live.”

It’s a taboo conversation in Western society, where we’re more comfortable talking about quality of life for our sick pets than we are about our own or our loved one’s end of life. But for Care Dimensions, hospice is just one more part of the health-care continuum, with death considered a natural life event rather than a medical crisis.

Patricia Ahern, Care Dimensions’ president and CEO, likens the process to a pregnancy, where the mother enlists a health care and support team. “End of life is a second kind of midwifing,” she explains. “You need to surround yourself with people who understand that this is a unique time. It’s more than just the sum of the parts of you that don’t work anymore. It’s about helping you complete your life in as dignified way as possible.”

The new hospice: From chemo to massage to music therapy

Once enrolled in hospice with Care Dimensions, patients are assigned an interdisciplinary team of specialists. Doctors, nurses, and nurse’s aides oversee and administer the patients’ medical care, often at home. While hospice of the past mandated discontinuing medical treatments that prolong life, that’s no longer strictly the case as Care Dimensions’ “early access” policy allows hospice patients to continue some active treatments, which could include chemotherapy, radiation, or IV medications, if it will improve the patient’s symptoms or quality of life.

Another crucial part of the interdisciplinary team is social workers, who provide emotional and practical support for families. They and Care Dimensions’ chaplains, who administer to patients’ spiritual needs, work toward giving people peace of mind. And bereavement counselors provide grief support to patients’ survivors, as well as members of the community regardless of hospice involvement.

Meanwhile, volunteers—more than 450—provide companionship for patients and additional support for families. The goal, says Ahern, is for patients to never feel alone, even if they don’t have a large support system nearby.

This often fosters deep relationships between patient and care team. Ahern says, “The intimacy of the relationships really boils down to us thinking that we’re not doing things to patients and families, but for them. It’s not just a clinical encounter; it’s a social encounter, too.”

It’s never too soon, until it’s too late to think about palliative care

For people at any stage of a serious illness or not quite ready for hospice, Care Dimensions offers palliative care consultations. In this program, patients receive treatments to control complex symptoms—for example, nerve blocks to manage pain or medication management to improve shortness of breath. A Palliative Care physician or nurse practitioner helps the patient and family clarify goals and options, create advanced care plans, and ensure the patient’s needs are being met.

By introducing patients to the benefits of treatment sooner, palliative care forms a bridge to hospice later on.

Managing care. Managing costs.

When you look at the comprehensiveness of what’s provided by Care Dimensions’ hospice teams—from at-home visits from the clinical team and complementary therapies like massage, music, and pet therapy to medications and medical equipment­—it would seem like hospice would be costly. But, in reality, hospice care is very efficient and cost effective. In fact, very few Care Dimensions patients are ever readmitted to the hospital, the costliest location of care. Compare this with the 15.3 percent percent readmission rate for traditional medical care.

Hospice is available to nearly everyone; Medicare, Medicaid, and most commercial insurance plans cover hospice care completely, and some patients often have fewer out-of-pocket expenses because they’re covered by hospice. Thanks to philanthropic support, Care Dimensions doesn’t turn away any patient unable to pay; it provided more than $1.2 million in free care in the past five years.

Providing a safety net and creating an environment of care

When a patient needs acute symptom management or their care becomes too complicated to manage at home, Care Dimensions offers alternatives to hospital admission: the 20-bed Kaplan Family Hospice House in Danvers, and its new 18-bed Care Dimensions Hospice House in Lincoln on the Waltham line, which are two of only six freestanding inpatient hospice facilities in the state.

“We invested in the Lincoln house because of our commitment to provide the best care for our patients,” said Ahern. “Most of our patients will never need to go to one of our inpatient hospice houses because they’re comfortable at home, but it’s important to provide them with that safety net, so they don’t have to go back to a hospital if they have a pain or symptom crisis.”

At first glance, the Lincoln house, perched atop a wooded hill overlooking the Cambridge Reservoir, looks like a quintessential New England ski lodge. A step through the doors of the facility brings an enveloping sense of quiet and calm. The space is devoid of the antiseptic odors, blaring intercom announcements, and rushing typical of a hospital or nursing home. It’s a beautifully designed space, with several pieces of art on loan from the nearby deCordova Museum, as well as originals by local artists.

Common areas—decorated in soothing neutrals and complete with plush seating, tall windows, and airy high ceilings—give families spaces to gather, meet for spiritual contemplation, or take time for themselves. On each floor there’s a children’s playroom stocked with toys and books, and a kitchen and dining area. Families can visit at any time of day or stay over; even leashed pets are welcome.

Private rooms are spacious and light and have cushioned window seats or open out to brick patios. Oxygen and medical equipment are cleverly hidden behind what look like ornamental wall panels. Patients are encouraged to decorate ledges and tabletops with their personal photos, books, or other mementos.

Rev. Sharon Dunbar-Link, a Care Dimensions chaplain, says, “People report a sense of relief that they’re able to bring their family member here. Many times they’re having a hard time managing symptoms at home, or they’re feeling overwhelmed. When they’re here, they can stop being caregivers for a while and just be family.”

Learn more at CareDimensions.org/CDHH