Palliative care can be anything from pain management to spiritual care. It’s a type of treatment that addresses a patient’s unique and individual needs. Palliative care can be a great comfort to people at all stages of a serious illness, but it’s often misunderstood. It’s not just another name for hospice care. 

Here, we’ll talk about:

• What palliative care is and what it isn’t
• Myths about palliative care
• Finding resources for providers for your care recipient 

Do you need more information about care and caregiving? Check if you have free access to Trualta’s resources. 

Why Palliative Care Can Be Confusing

Anything is confusing if you don’t understand it. Some people think they know what palliative care is but hold onto several misconceptions. Palliative care is holistic, quality-of-life care. 

Holistic Care

Holistic means that it takes into account the whole person, not just their illness or disability. For example, a person living with cancer can benefit from mental health care even though it doesn’t treat the cancer itself. 

Quality-Of-Life Care

Quality-of-life care means that the goal of palliative care is to improve a patient’s overall wellness and comfort. An illness or disease affects their quality of life, and palliative care addresses this. 

For example, a cancer patient experiences pain and nausea from chemotherapy treatment. Palliative care includes medications that minimize these side effects. This care doesn’t treat the cancer, but it helps the patient feel more comfortable.

Basics Of Palliative Care

Both early palliative care and advance palliative care for illness include specific areas of health and wellness. The basic categories for palliative care service include: 

• Symptom and pain management
• Mental health care and emotional support
• Care coordination
• Information and decision-making
• Family and caregiver support

Once you and your care recipient understand what palliative care is and what it isn’t, you can make better decisions about it. Below are some of the common myths many people have about palliative care. 

Myth 1: Palliative Care Means Giving Up On A Cure

Palliative care is for people with serious illnesses or conditions. It’s designed to help patients at every stage, even the early stages or during times of aggressive treatment. 

Palliative care doesn’t mean giving up on treating the disease. Patients can receive palliative care while also undergoing curative treatment or treatments that aim to extend their life. 

Palliative care is not a last resort and should not be used that way. Every patient with a serious condition or chronic illness should have access to good palliative care at all times.

This common misconception can be scary for the patient with an illness. They may assume that being offered palliative care services means they have no other options. They might think it means they’re dying and that their physicians are giving up on them. As a caregiver, you can help by explaining what it really means and how palliative care could help them. 

Myth 2: Palliative Care Doesn’t Do Anything

If palliative care doesn’t actually treat a disease or condition, how can it be helpful? This is a common question. And the idea that palliative care doesn’t actually do anything to help patients is a myth. Too many people assume that it’s just another form of hospice care. 

The most immediate thing palliative care does for patients is improve quality of life. It addresses pain and other symptoms. In addition to boosting quality of life, managing symptoms actually improves a patient’s health. 

Studies show that relieving pain and distress leads to better outcomes for patients. If their pain is manageable, for instance, they tolerate treatments better, which leads to better results. 

Other studies show that palliative care reduces the need for hospitalization. It’s always best to avoid acute health care if possible. A visit to the hospital can be stressful. It also increases your care recipient’s risk for infection. 

Myth 3: Palliative Care Is Only For End-Of-Life Patients

There is a common misconception that palliative care is only part of hospice care for the dying. Anyone with a serious illness at any stage can benefit from palliative healthcare providers. This includes cancer, dementia, Parkinson’s disease, heart failure, and more. 

Palliative care is useful for improving quality of life for patients in every stage of a terminal illness. It helps alleviate symptoms and also helps patients understand their treatment options. 

Of course, palliative care services are important for terminally ill patients nearing the end of life. They benefit from symptom relief, mental health care, spiritual care, and other aspects of palliative care. 

Myth 4: Palliative Care Is Only Provided In Nursing Homes

Palliative care is common in nursing homes and hospice care facilities. It can also be a type of home care. If you take care of a loved one in their home, they can also receive palliative treatments. 

It takes many forms depending on the patient’s needs. Care providers can come to the home. Your loved one can also benefit from care during appointments at doctor’s offices or during hospital visits. Hospice patients also receive palliative care in designated facilities. 

Adaptability to each patient’s unique needs is an important aspect of palliation. If your loved one can stay home and receive care in place, this should be an option. 

Myth 5: Palliative Care Involves Painful & Aggressive Treatments

Palliation is all about improving quality of life. It generally doesn’t involve treatments that make the patient feel worse. Most importantly, palliative care choices are up to the patient. 

Some examples of palliative treatments include: 

• Medications for pain management or to manage the side effects of treatments
• Symptom management
• Mental health care, such as therapy or group support
• Mobility aids or physical therapy to improve mobility
• Care coordination for care planning and to improve communication between healthcare providers, patients, and their family members
• Financial counseling or assistance
• Explanations of treatment options, end-of-life care, and other specialized medical care

Another important part of palliative care is helping patients become partners in their own care. Your care recipient doesn’t have to accept every treatment offered by their medical team. 

Palliative care helps patients learn their treatment options so they can decide. Some patients, even those who are dying, don’t want to accept aggressive treatments that make them feel worse. Palliative care empowers patients to make these decisions for themselves. 

Myth 6: Palliative Care Keeps Caregivers Out Of The Decision-Making Process

Good palliative medicine includes everyone involved in the patient’s care. It’s a team effort, often led by a medical team but involving caregivers and family. 

The palliative care team may include various types of professionals, too, not just doctors: nurses, social workers, financial planners, therapists, spiritual leaders, alternative medical care providers, and more. 

While the final decisions about care should be the patient’s, palliative care includes a patient’s loved ones. Caregivers are important resources on palliative care teams. They can provide useful information about a patient’s day-to-day functioning and wellness, which is vital for decision-making. 

Myth 7: Palliative Care Services Are Expensive & Inaccessible

Palliative care should not be expensive, but some patients may experience financial barriers. Insurance coverage varies, but many plans do include hospice care and palliative care. 

Access isn’t usually an issue, either. Most hospitals and medical centers have palliative care teams. However, some people living in more rural areas may experience challenges when accessing palliative medicine. 

Myth 8: Palliative Care Is Only For The Patient

Palliative care is primarily for the patient but also benefits others. The goal of primary palliative care is to improve the quality of life for the patient, their family, and their caregivers. 

Family members and caregivers benefit from information and resources provided by palliative care teams. This information helps them better care for their loved ones and themselves during difficult times. 

As a caregiver or loved one, you can participate in counseling or support groups. You can benefit from respite care and care coordination, which makes it easier to make and keep appointments for treatments, tests, and more. 

How To Help Your Care Recipient Get Palliative Care

Talk to your care recipient and their family (if you’re not a family caregiver) to discuss the possibility of palliative care. If they’re interested, it’s important to bring up the subject with the care recipient’s medical team. They may be able to provide a palliative care referral. 

You can also help your care recipient and their family reach out to palliative care providers. Use this resource from the National Alliance for Care at Home to search for providers in your area. 

Palliative care is an essential type of medicine. It helps patients and their loved ones in so many ways. For patients to get the benefits, they need to understand them. If you’re a caregiver, talk to your loved one about palliative care and what it means. 

Do you need more information about care and caregiving? Check if you have free access to Trualta’s resources. 

References

1. https://allianceforcareathome.org/find-a-provider/?_google_map=1.492193%2C-138.458443%2C60.456341%2C-76.759224
2. https://www.health.harvard.edu/blog/palliative-care-frightens-some-people-heres-how-it-helps-202209142817
3. https://pmc.ncbi.nlm.nih.gov/articles/PMC3139393/
4. https://pubmed.ncbi.nlm.nih.gov/33048152/
5. https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care