According to an article published in BMC Medicine, by 2040, at least 75% of people approaching the ends of their lives will require or greatly benefit from palliative care. Also referred to as “supportive care,” palliative care is possibly one of the more misunderstood terms and services within the healthcare industry. Many individuals believe that palliative care is essentially hospice care when, in fact, it’s much different. What’s more, palliative care is something that can bring hope and the potential for a better quality of life for individuals facing serious illness. It can also benefit their caregivers.
Below, we’ll discuss the basics for caregivers to learn about palliative care so they can better understand how it may benefit them and their loved ones.
The Current State of Family Caregiving
When an individual is living with a serious illness, it’s their immediate or closest relatives who typically provide ongoing care. Family members who provide this care may find that it becomes a large part of their life, leaving them with less time for anything else. As a result, this can lead to caregiver burnout.
Caregiver burnout is a phenomenon that reportedly affects at least 36% of the 53 million unpaid family caregivers in the United States, according to a report conducted by the AARP and the National Alliance for Caregiving. Aside from feelings of exhaustion, caregiver burnout also contributes to:
- Changes in eating habits, including overeating or not eating enough
- Loss of interest in regular activities or spending time with certain people
- Sleep issues, such as insomnia
- Feelings of isolation
- Depression and anxiety
- Feeling a loss of control
- Substance use or addiction
- Feelings of resentment toward the loved one
Caregiver burnout is most often the result of having a high workload in addition to the demands that come with a loved one’s medical condition. The emotional toll of seeing a loved one struggle also plays a strong part in this, as does a lack of resources, whether they be financial or educational.
Palliative Care, Explained
Palliative care refers to specialized medical care for individuals with serious illnesses. It involves a specially trained medical team — usually one that’s led by a doctor — to provide care. This team usually consists of a registered nurse with a Certificate of Added Qualifications (CAQ) in Palliative Medicine and Hospice Care, along with other specialized providers such as social workers, nutritionists, and chaplains.
Palliative care teams are designed to collaborate with the individual’s primary medical team to provide extra support during each stage of illness. The goal is to improve the individual’s overall quality of life as well as the quality of life of the immediate family members who would traditionally become the caregivers.
The duties of a palliative caregiving team can vary depending on the individual’s needs. For example, your loved one’s palliative care team might provide support with the following:
- Daily activities, such as bathing, grooming, dressing, eating, etc.
- Comfort and relief for the individual’s pain or other symptoms
- Education for the individual and their family on their illness and how it may progress
- Exploration of the individual’s goals and help in achieving those goals regarding treatment options and daily routines
- Assistance to help the individual maintain as much independence as possible at each stage of their illness
Palliative care can be provided in homes, hospitals, nursing homes, outpatient care clinics, and even respite care facilities. It all depends on an individual’s condition and preferences. It should be noted, however, that palliative care does not involve seeking a cure for the individual’s condition. The focus is on relief from the individual’s symptoms and stress while providing extra support to the individual and their family.
The Benefits of Palliative Care
Palliative care comes with a range of benefits for both the individual and their family. These benefits include:
- Putting the individual’s goals, wishes, and decisions first
- Providing relief to the family by ensuring their loved one is taken care of while they’re at work or need a break from caregiving
- Supporting families and individuals in understanding the illness in question and the treatment options
- Improving the overall quality of life for the individual and their family
- Providing as much pain relief and symptom control as possible
- Reducing unnecessary hospital visits through symptom management and supervision
- Focusing on the body, mind, and spirit of the individual to encourage wellness
Essentially, having a palliative care team is having a team of caregivers that will be there for your loved one so you can have peace of mind without impacts on your quality of life.
When Is Palliative Care Necessary?
Palliative care is support that’s given based on need rather than prognosis. It can be used for individuals of any age and during any stage of a serious illness, regardless of whether the condition is chronic, curable, or terminal. It can also be provided at the same time as curative treatments, including chemotherapy, radiation, and surgeries.
Some common medical conditions associated with palliative care include:
- Cancer
- Congestive heart failure (CHF)
- Liver failure
- Kidney failure
- HIV/AIDS
- Spinal injuries
- Brain diseases, including stroke, ALS, and Parkinson’s
- Multiple sclerosis (MS)
- Dementia, including Alzheimer’s
- Chronic obstructive pulmonary disease (COPD) and other lung diseases
Palliative care is more likely to be suggested when someone experiences:
- Frequent visits to the emergency room
- Multiple (three or more) admissions to the hospital for the same symptoms within a year
- Eating issues directly caused by the illness
- Serious side effects from current treatments for the illness
Palliative care doesn’t solely focus on the challenging symptoms of an illness but the overall benefits of potential treatments as well as their side effects. These can include the financial, emotional, and physical stresses that come with dealing with serious illnesses — all while ensuring the individual’s coordinating care, dignity, and shared decision-making are accounted for.
Paying for Palliative Care
Caregiving can become expensive. Fortunately, many health insurance companies cover palliative care services the same way they cover regular healthcare procedures and medications. It’s best to consult with your loved one’s insurance company to find out exactly what their policy covers. If your loved one doesn’t have health insurance, Medicare and Medicaid are often options to help mitigate the costs.
Palliative care is an excellent way for caregivers to get extra support when their loved one is experiencing a serious illness. Your loved one receives high-quality care while you have the ability to focus on spending quality time with them while avoiding caregiver burnout.
Resource Links
“How many people will need palliative care in 2040? Past trends, future projections and implications for services” via the National Library of Medicine
“Caregiving in the U.S.” report via the AARP and the National Alliance for Caregiving
“Specialty Palliative Care Certification” via the Center to Advance Palliative Care
“Hospice Benefits” via Medicaid.gov