Possibly the most misunderstood medical term for patients, not to mention some health professionals, is Palliative Care. And this distinct medical specialty does itself no favors in the public relations field! Palliative care is way more than caring for the terminally ill at end of life.
Many institutions use more appropriate, less stigmatized euphemisms … like Supportive Care or the Symptom Management Service in UCSF’s Department of Medicine. This is one of our favorite synonyms because it says exactly what palliative care sets out to do … treat the physical, mental and spiritual side effects arising from serious and often life-threatening disease. The palliative care specialty trains its professionals in fields as diverse as pain management, nausea control, and coping with fatigue to handling mental health issues and spiritual wellbeing.
Long before a patient even thinks about hospice, for their condition may not require contemplating end-of-life care, they should seriously consider adding a symptom management /palliative care professional to their medical team. And often these services will include social workers and chaplains along with doctors, nurses, psychologists, social workers and more.
Most palliative services also provide nurture and care for caregivers too. Often forgotten in the scheme of the patients’ treatment, caregivers can find professionals to also address their needs in many supportive and palliative care groups.
If and when the time does arise for end-of-life care, it will be a much smoother transition if you already have a palliative care professional in place. No matter how far off in the distance death remains, the palliative care professional will have been worth their weight in gold in your treatment plan.
One last ‘heads-up’ when considering to add a supportive care professional to your team. Not all your existing medical team may welcome the move. Even in the very best hospitals, there can realistically be pushback from other specialty doctors, largely because many doctors misunderstand palliative care and confuse it with end-of-life care. They may also see you, the patient, as their ‘turf’ and overestimate their own skills in supporting you. While your ‘quarterback’ doctors may have a working knowledge of how to address symptoms like pain or nausea, that is not their specialty and they may not have the cutting-edge knowledge or experience a palliative care professional brings to the team.
Remember, you are you own best advocate. In many hospitals and palliative care practices, you can self-refer if you encounter resistance. Bottom line – be smart and add a palliative care professional to your health team earlier rather than later.
Source:
Rick Davis, Founder of ANCAN (Advocacy, Navigation, Support)
Palliative care is care given to improve the quality of life of patients who have a serious or life-threatening disease, such as cancer. Palliative care is an approach to care that addresses the person as a whole, not just their disease. The goal is to prevent or treat, as early as possible, the symptoms and side effects of the disease and its treatment, in addition to any related psychological, social, and spiritual problems. Palliative care is also called comfort care, supportive care, and symptom management. Patients may receive palliative care in the hospital, an outpatient clinic, a long-term care facility, or at home under the direction of a physician.
Palliative care is usually provided by palliative care specialists, health care practitioners who have received special training and/or certification in palliative care. They provide holistic care to the patient and family or caregiver focusing on the physical, emotional, social, and spiritual issues cancer patients may face during the cancer experience.
Often, palliative care specialists work as part of a multidisciplinary team that may include doctors, nurses, registered dieticians, pharmacists, chaplains, psychologists, and social workers. The palliative care team works in conjunction with your oncology care team to manage your care and maintain the best possible quality of life for you.
Palliative care specialists also provide caregiver support, facilitate communication among members of the health care team, and help with discussions focusing on goals of care for the patient.
Palliative care may be provided at any point along the cancer care continuum, from diagnosis to the end of life. When a person receives palliative care, he or she may continue to receive cancer treatment.
Whereas palliative can begin at any point along the cancer care continuum, hospice care begins when curative treatment is no longer the goal of care and the sole focus is quality of life.
Palliative care can help patients and their loved ones make the transition from treatment meant to cure or control the disease to hospice care by:
- preparing them for physical changes that may occur near the end of life
- helping them cope with the different thoughts and emotional issues that arise
- providing support for family members
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