Debunking Common Myths about Palliative Care
There are a variety of misconceptions when it comes to palliative care. Historically, palliative care has been lumped in the same category as ‘end of life’ care or hospice, with many assuming it’s only accessible to those who are severely sick and dying. While palliative care certainly involves helping patients with severe illnesses, that doesn’t mean it’s for end of life. In fact, this type of specialized care includes a wide range of services that can be helpful to brain tumor patients for months or even years.
WHEN SHOULD A BRAIN TUMOR PATIENT SEEK PALLIATIVE CARE?
We often recommend it when an illness or diagnosis significantly impacts the quality of a patient’s life. When it comes to something like a brain tumor diagnosis that can drastically change the way in which someone is able to care for themselves, palliative care can be incredibly helpful to the patient and even the caregiver. By treating a patient holistically, we can address the discomforts that commonly arise with a brain cancer diagnosis and the challenges of treatment. If introduced early enough, we can contribute to drastically improving their quality of life.
10 MYTHS ABOUT PALLIATIVE CARE
To debunk the common misconceptions about palliative medicine, here is a list of 10 common myths and the truth behind each one.
MYTH #1: Palliative care is another name for hospice care.
Palliative care is a comprehensive specialty care designed to support patients with a serious or life-threatening illness from diagnosis on, including during treatments and hospitalizations. Hospice care, on the other hand, is designed to support people with a terminal illness who are no longer seeking curative treatments. Palliative care helps a patient maximize their quality of life during their treatment journey.
It’s important to note that palliative care is not a hospice-centered service. In other words, the palliative team is not trying to talk someone into hospice, but rather understand how to protect the patient and be an advocate for them. What we explain to families or bedside staff is that you hear the word “live” in “palliative” because palliative is about living and it starts from diagnosis.
MYTH #2: Palliative care is just for patients with terminal cancer.
Palliative care is designed for anyone with a serious illness or life-threatening condition. Examples include COPD, heart diseases, lung diseases, kidney diseases and liver diseases, to name a few. Palliative care sees patients for as long as that person needs help in managing the impact of their illness. This could be short term in a hospital setting or long term in the community setting. Palliative care walks beside you in your journey.
MYTH #3: Palliative care is not for patients who want to keep fighting.
“Am I going to die soon?” “I’m not ready to go palliative.” These are both common phrases we hear when palliative care is brought up during a patient’s treatment journey. Palliative care is designed to help in a holistic way to address the psychosocial, spiritual and physical impact of a serious illness so that patients can live their best life.
The earlier palliative can be introduced, the sooner it can make a bigger impact, which is the whole theory behind this type of treatment. For example, a brain tumor patient might experience side effects from a drug like nausea and vomiting that it make it difficult to eat. With palliative care, a professional can help them manage these side effects so that they can build up their strength and their mobility to keep up with daily activities and treatments. Palliative care can assist in controlling the ripple effect of an illness or therapy.
MYTH #4: People cannot receive other types of treatments such as chemotherapy, surgery or dialysis while receiving palliative care.
Palliative care actually plays a vital role in this part of a patient’s journey. During treatment, it’s not uncommon for patients to experience side effects like a change in their taste, shortness of breath and so on. Our goal is to help patients manage these symptoms so that they have the ability to make it to the clinic to receive treatment and so that they’re not susceptible to being admitted to the hospital again, which would ultimately postpone their therapy.
MYTH #5: Palliative care means my doctor has given up hope for me.
On the contrary, palliative care means your doctor cares about your condition. This type of care does not mean giving up hope, but rather adding an additional layer of support to you and the treatment team. It can greatly contribute to lessening the intensity of illness-related symptoms and possible complications or delays in therapies.
MYTH #6: Once I start on palliative care, I will stop seeing my other doctors.
Palliative care is a service that is provided in conjunction with your primary doctor. It’s not uncommon for us to hear that patients and families often feel confused at the end an appointment because their healthcare providers frequently used medical jargon, the visit was very brief and they felt overwhelmed with all of the new information. Palliative care can help facilitate the communication between physician and patient, ultimately helping the family or individual make the best treatment decisions based on their wants and needs.
MYTH #7: Palliative care is only for pain.
Palliative care is a holistic approach in the medical assessment of a physician. It’s about assessing not only the patient’s disease and what their treatment plan will be, but also what the symptoms are and how they can be managed properly. We figure out a patient’s line in the sand so we can protect them from things that are not acceptable ways of living in their personal viewpoint. Meaning, we talk about advanced directives and make sure they understand what their options are. It can be scary for people, but it really is empowerment. There’s a social worker who can help with emotional support and resources, as well as a chaplain who can provide spiritual support. It’s much more than managing pain, it goes deeper than that.
MYTH #8: The doctors and nurses in palliative care are not experts in the field.
Palliative care requires a comprehensive understanding of diseases and conditions across the board. To be skilled in this type of treatment, one must be well-versed in disease-related symptom management, verbal and nonverbal communication methods, and holistic approaches related to wellbeing and health. There is a national board certification in palliative care and when looking for a palliative team, it’s important to look for providers and team members who have this certification.
MYTH #9: Palliative care will cost my family a lot of money.
This type of care is a medical specialty just like an oncologist or cardiologist, and the bills are sent the same way. Just as with any other medical specialty, palliative care visits are covered by Medicare, Medicaid, and most commercial insurers with applicable copayments and deductibles.
MYTH #10: Palliative care is only available in hospitals.
Palliative care is available in multiple settings. It’s most commonly available in the hospital, but depending on your community resources, palliative care can be in clinics, nursing facilities, and homes.
Palliative care does require a physician order for an initial consultation because it’s a medically provided process. It’s important to know that utilizing palliative care does not mean that your doctor has given up on you or that you have to stop your therapy. There is a strong community around palliative medicine and above all else, palliative care is about living.
If interested in learning whether palliative care is right for you or a loved one, we encourage you to speak with your provider about a referral.
About the Author: Belinda Ordonez, MSN, APRN. FNP-BC, CHPN is a Nurse Practitioner with Dignity Health Medical Group in the department of Palliative Care at St. Joseph’s Hospital and Medical Center. Belinda’s expertise includes palliative, hospice, and geriatric care and she is board-certified in hospice and palliative care. She is a member of Hospice and Palliative Nurses Association. She is a train the trainer for the ELNEC (End of Life Nursing Education Consortium) program and teaches the course at St Joseph’s Hospital to nursing and staff. She serves as faculty for Creighton Hospice and Palliative Fellowship program as well as mentors nurse practitioner students. Belinda has a collective 26 years of experience caring for persons with an advanced illness across the age span in hospice, palliative care as well as geriatrics.
Sylvianna Anderson, ADN, RN
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