It’s never easy — that point where a loved one’s medical care must shift from actively treating an illness to managing pain and other symptoms in preparation for their end of life. There’s an emotional component that often doesn’t exist at any other period in one’s life.
There’s also a time crunch. The need to learn quickly about your options can make it feel as if you don’t have enough time to make an informed decision.
Although 1.6 million Medicare beneficiaries entered hospice care in 2019, according to the National Hospice and Palliative Care Organization, hospice as a care option isn’t new. And while it once carried the (false) stigma “giving up” or bringing on death sooner, it’s an option that offers many benefits to patients and their families.
Credit: Pexels
Credit: Pexels
“There are misconceptions about hospice in general, and people see it as giving up hope when it’s really about making sure someone doesn’t suffer and has dignity through the end of life,” Carla Levingston Polikov, LMSW with Weinstein Hospice, told The Atlanta Journal-Constitution.
Realizing a loved one may need hospice can heighten those misconceptions. This is why, according to Polikov, hospice conversations should happen sooner rather than later.
“People think hospice comes in and stops everything, hastening death, but the treatment really respects the body and what it’s naturally doing as it lives out its natural length,” Polikov said.
To look at hospice care outside of a personal scenario where someone is already dying is to see it objectively. This can make it easier for you, as a loved one, or as the person entering their end of life, to decide this is the right treatment option.
“It’s very scary when families and individuals face a life-limiting illness, but comfort care does not mean giving up,” Jennifer Prescott RN, MSN, CDP at Blue Water Hospice, told The Atlanta Journal-Constitution.
Prescott suggests talking with loved ones about their wishes as they age and getting all the important components in writing. As the one aging, this allows you to make it easier for your family to navigate any potential illness that may arise. It also lets you plan ahead to ensure you get the treatment you want.
But having these conversations at any stage means talking about death — and that’s often very difficult. However, pushing through the discomfort can create a safe space to express your wants and desires as you approach the end of your life.
“It’s not always an easy conversation because people don’t want to talk about death. Sometimes it’s all about the practicalities. Others are numb and can’t have a lot of conversation around it,” Rabbi Judith Beiner, community chaplain with Jewish Family & Career Services Atlanta, told The Atlanta Journal-Constitution.
Arriving at the need for hospice doesn’t have to happen without the input of a medical professional.
Usually, it’s deemed medically necessary or appropriate first, based on a variety of signs. First and foremost, a person must have a progressive disease that’s causing physical and mental change.
Additional signs include a rapid decline in health, frequent hospitalizations, declining alertness and willingness to eat, unsuccessful medical treatments, and an increased need for help with basic activities.
“Hospice is a service that’s used when a disease gets to a point when treatment stops offering the potential to control or cure it,” Prescott said.
Although the conversation may begin at the insistence of a doctor, it’s also up to you to advocate for yourself or your loved one.
“If you just get a feeling that things are changing, it’s okay to talk to someone and see if hospice is an option. If it’s not, you’ll learn more about what to look for,” Polikov said.
Entering into hospice care, whether you opt for an in-patient experience or one at home, changes the focus from treating the illness to managing symptoms and pain.
“The goals of hospice focus on pain and symptom management and improving quality of life without seeking aggressive treatment,” Prescott said.
While hospice care plans are unique to each patient, the types of services provided include pain and symptom management, care and grief support, and other special services. Care also includes assisting the patient and family members with emotional, psychosocial, and spiritual aspects of death.
You also have different care options under the hospice umbrella; you aren’t forced to pick one and stick with it the entire time. The most common type of hospice care is routine hospice care. This is done in the patient’s home. Continuous hospice care is also performed at home but involves between 8 and 24 hours of care per day to manage pain and acute symptoms. This service is predominately performed by a nurse.
The other two care options take place in an in-patient facility. Inpatient respite care provides temporary relief to the caregiver who lives at home with the patient. This means the patient leaves the home for a short period and receives care in a hospital, hospice facility, or another long-term care facility.
Credit: Pexels
Credit: Pexels
General inpatient care shifts all the caregiving to a Medicare-certified hospital, hospice in-patient facility, or nursing facility where the individual can receive 24-hour direct care if necessary.
These choices raise another concern for families deciding to put a loved one in hospice: Where should they be? Home may feel like the most comfortable choice, but according to Beiner, in-patient facilities won’t feel like a hospital and shouldn’t be discounted.
“When a person goes into a hospice facility, (the) family can come and go. The peace you can experience as a family with that kind of care is the very best we can do for families in upholding the comfort and dignity of the dying,” Beiner said.
As a chaplain, Beiner sees many hospice patients at the very end of their life journey. Her main goal is to give “everybody a focus” in this last phase of life, “bringing God and holiness into the room.”
“In our society, we are so afraid to touch death, but in those moments there is still love and we’re right there as it’s happening being together. We’re not afraid in the moment, and all emotions are real. These are the moments when we’re all human,” Beiner said.
After establishing the care location as well as the care plan, the next concern may involve cost. Medicare covers hospice 100%, but in the home that doesn’t translate to total care. While hospice is the highest level of home care, it consists of skilled visits in the home, rather than round-the-clock care.
Regardless of location, the focus on the emotional well-being of both the patient and the family members is an essential component of care. This ties back to the philosophy that fuels all palliative care, of which hospice is a part. The entire interdisciplinary approach is dedicated to optimizing the quality of life for any patient with a serious or chronic illness.
Palliative care can be provided at any point in an illness and is often administered in conjunction with curative measures. However, if those curative measures cease to be useful, a patient may shift into hospice care.
The two terms are not interchangeable, which is what Polikov hopes people take away.
“Hospice is a form of palliative care offered at the terminal stage of an illness; it’s a stage of palliative care only,” Polikov said.
According to the National Hospice and Palliative Care Organization, the average length of time in hospice was just shy of 93 days in 2019.
Regardless, all palliative care plans are created to meet the specific need of the individual and are often adjusted many times over. At the heart of the care plan, you’ll always find the patient.
“The focus of hospice is to allow people to live their best lives each day through caring versus curing,” Prescott said.
There are a variety of resources available to those who want to learn more about hospice care. Prescott recommends families talk with friends and the patient’s healthcare team first to get referrals. Polikov suggests calling local facilities to ask questions. Online, caringinfo.org provides patients and caregivers with tools applicable at this stage of life.
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