What are the hospice options?
Realizing that a loved one may need palliative care can reinforce these misconceptions. This is why, according to Polikov, conversations about palliative care should take place as soon as possible.
“People think hospice comes in and stops everything, hastening death, but the treatment really respects the body and what it does naturally while it lives its natural length,” Polikov said.
To look at palliative care outside of a personal scenario where someone is already dying is to see it objectively. This may make it easier for you, as a loved one or as someone at the end of life, to decide that this is the right treatment option.
“It’s very scary when families and individuals are faced with a life-threatening illness, but comfort care doesn’t 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 get older and getting everything important in writing. As an aging person, this allows you to make it easier for your family to deal with any potential illnesses that may arise. It also allows you to 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, overcoming discomfort can create a safe space to express your wishes and desires as you near 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 much conversation about it,” Rabbi Judith Beiner, community chaplain for Jewish Family & Career Services Atlanta, told The Atlanta Journal-Constitution.
Arriving at the need for palliative care should not occur without the input of a medical professional.
Usually it is first deemed medically necessary or appropriate, based on various signs. First and foremost, a person must have a progressive disease that causes physical and mental changes.
Other signs include a rapid decline in health, frequent hospitalizations, decreased alertness and willingness to eat, unsuccessful medical treatments, and an increased need for assistance with basic activities.
“Hospice is a service used when an illness reaches a point where treatment ceases to offer the potential to control or cure it,” Prescott said.
Although the conversation may begin at the insistence of a doctor, it is also up to you to defend your case or that of your loved one.
“If you just feel like things are changing, you can talk to someone and see if hospice is an option. If not, you’ll learn more about what to look for,” Polikov said.
Entering palliative care, whether you opt for a hospital or home-based experience, changes the focus from treating illness to managing symptoms and pain.
“Hospice goals focus on managing pain and symptoms and improving quality of life without resorting to aggressive treatment,” Prescott said.
Although palliative care plans are unique to each patient, the types of services provided include pain and symptom management, bereavement care and support, and other special services. Care also includes assisting the patient and family members with the emotional, psychosocial and spiritual aspects of death.
You also have different care options under the hospice umbrella; you don’t have to choose one and stick to it all the time. The most common type of palliative care is routine palliative care. This is done in the patient’s home. Ongoing palliative care is also provided at home but involves between 8 and 24 hours of care per day to manage pain and acute symptoms. This service is mainly provided by a nurse.
The other two care options take place in a hospital setting. In-hospital respite care provides temporary relief to the caregiver who lives at home with the patient. This means the patient leaves home for a short time and receives care in a hospital, hospice or other long-term care facility.
General inpatient care transfers all care to a Medicare-certified hospital, hospice, or nursing facility where the person can receive direct care around the clock if needed.
These choices raise another concern for families deciding to place a loved one in a nursing home: where should they be? Home may seem like the most comfortable choice, but according to Beiner, inpatient facilities won’t feel like a hospital and shouldn’t be overlooked.
“When a person enters a hospice, (the) family can come and go. The peace you can feel as a family with this type of care is the best we can do for families in keeping the dying comfortable and dignified,” Beiner said.
As a chaplain, Beiner sees many palliative care patients at the very end of their life course. Its main purpose is to give “everyone a purpose” in this last phase of life, “bringing God and holiness into the room”.
“In our society, we are so afraid of touching death, but in those moments there is always love and we are there, because it happens together. We are not afraid in the moment, and all the emotions are real. These are the times when we’re all human,” Beiner said.
After establishing the place of care as well as the plan of care, the next concern may be cost. Medicare covers 100% palliative care, but at home, that doesn’t translate to full care. Although hospice is the highest level of home care, it consists of skilled home visits rather than 24-hour care.
Regardless of the setting, a focus on the emotional well-being of the patient and their family members is an essential component of care. This refers to the philosophy that drives all palliative care, of which hospice is a part. The entire interdisciplinary approach is dedicated to optimizing the quality of life of any patient with a serious or chronic disease.
Palliative care can be provided at any time during an illness and is often given in conjunction with curative measures. However, if these curative measures cease to be useful, a patient can move on to palliative care.
The two terms are not interchangeable, which Polikov hopes people will remember.
“Hospice is a form of palliative care offered at the terminal stage of an illness; it is a stage of palliative care only,” Polikov said.
According to the National Hospice and Palliative Care Organization, the average length of hospice stay was just under 93 days in 2019.
Either way, all palliative care plans are created to meet the specific needs of the individual and are often adjusted over and over. At the heart of the care plan, you will always find the patient.
“The goal of hospice is to enable people to live their best lives every day by caring rather than curing,” Prescott said.
There are a variety of resources available for those who want to learn more about palliative care. Prescott recommends families first speak with friends and the patient’s healthcare team to get referrals. Polikov suggests calling local facilities to ask questions. Online, caringinfo.org provides patients and caregivers with tools applicable to this stage of life.
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