When dying at home isn’t possible
Most people want to die at home, and about 30 percent of Americans get their wish, according to a 2017 study published in The New England Journal of Medicine. But sometimes it just isn’t possible for a variety of reasons.
Sometimes, the end-of-life pain is too great for family members to manage at home, even with hospice care. Other times, a patient has difficulty breathing or uncontrolled nausea. Terminal agitation, where end-of-life patients become very agitated as toxins build up in the body, is also a common problem.
Experiences like this prompted an article in The New England Journal of Medicine titled, “Is There Really No Place Like Home?” In the article, lead author Melissa Wachterman, MD, a palliative care specialist at Harvard Medical School, and her co-authors argue that the current model for patients to die at home isn’t always the best patient-care decision. At certain times when symptoms are too much for a family to handle, a better experience might be possible in a more clinical setting.
Families can feel a sense of guilt about placing a family member in a clinical environment, especially if they promised their loved one they would let them die at home. But in reality, those clinical settings can allow family members to spend more quality time with their loved one, singing, praying and sharing memories, instead of focusing on the demanding work of caring for a dying loved one.
A perfect example is the McCarthy Care Center in Sandwich. The McCarthy Care Center is a 10-bed hospice general inpatient unit that provides extremely personalized end-of life care in a home-like setting.
“General inpatient level of care is similar to hospital level of care,” explained Nurse Practitioner Ellen McCabe, FNP-BC CHPN, who is the clinical manager at the McCarthy Care Center of the Visiting Nurse Association (VNA) of Cape Cod Hospice. “To be eligible to come to the McCarthy Care Center, you must have a symptom that cannot be managed at home or another setting despite the best efforts of everyone."
A Calming Place
Once it is determined that a patient qualifies for the McCarthy Care Center, they are given a private room with a private bath. Each room has a private deck that is large enough to accommodate a hospital bed, so the patient can enjoy a beautiful, wooded area with a gazebo, gardens and wildlife.
“Even though patients are in a crisis situation, there is a calmness here, with fresh flowers and pictures of their families in the room,” said Sharon Molinaro, RN, clinical/regulatory administrator for VNA of Cape Cod Hospice, an entity of Cape Cod Healthcare, which manages the facility. “There’s not a lot of bells and whistles going off. We’re not waking them every hour to do vitals.”
It’s not just medical needs that are met. Staff at the McCarthy Care Center provide a much more holistic model of care.
“We have chaplains, social workers and a whole team to address the needs of the mind, body and spirit, and not just for the patient, but also for the family” McCabe said. “We’re caring for the patient and family as a whole.
“I always think to myself, it’s the very best of the very worst situation. The very worst situation is that they are losing their loved one. The very best is that they could be surrounded by care that is not just focused on their medical needs, which is what qualifies you to be here, but also who you are as a person and who loves you.”
With that in mind, family members are allowed to visit at any hour of the day. There is a comfortable bed available in the room for them to sleep overnight and there are two living room areas so family members can take turns sitting with their loved one or taking breaks. Pets are even allowed to visit if they are up to date on all of their vaccinations, because the staff recognize that pets are an integral part of a patient’s family. That bond often becomes even stronger as patients become more debilitated and spend more time with their pets, McCabe said.
There are fresh baked goods in the kitchen at all times. The kitchen manager works with a nutritionist to create menus that meet patients’ medical needs but also provide delicious choices patients may be craving.
Not Everyone Qualifies
The McCarthy Care Center is not a long-term care option. Patients have to requalify to be there every day, based on symptom management. Most people stay at the McCarthy Care Center for three to five days and then transition back home, but some people do, in fact, die there.
“Everyone has a discharge plan, even if it looks like they might pass here, because they can shock us sometimes,” Molinaro said. “The end of life can be unpredictable. You could have somebody eat a whole meal and think they’re going to go home in a couple of hours and all of a sudden, they pass away. And then you have someone that is planning to probably die here but two days later they are being wheeled out the door. Everybody’s disease process is different.”
The goal is to get people back home. The one constant is that no matter where they are, they continue to get hospice support. That care transfers with them from home to facility and back.
Not every hospice patient qualifies for care at the McCarthy Care Center. First, they have to be a patient of the VNA Hospice program. Patients who are currently with a different hospice can transfer their care to the VNA Hospice. The only other qualification is to have a symptom that cannot be addressed by hospice at home like unmanageable pain, trouble breathing or extreme agitation.
Patients with frail elderly caregivers who are struggling to take care of custodial needs like repositioning patients, incontinence care or feeding wouldn’t qualify, but there is help available at skilled nursing facilities and it doesn’t have to be a permanent move.
“Under hospice, they might be eligible to get respite care at a skilled nursing facility,” McCabe said. “Medicare would provide five days of respite for the caregiver to either just take a break and recharge or to have the time to hire extra care so that their loved one could stay at home.”
