Palliative care
As medical advances allow people to live longer with managed disease or terminal illness, they may end up living with increased pain, symptoms, side effects, and suffering. At this stage, a person may be referred to or request palliative care.
The goal of palliative care is improved quality of life and reduced suffering. It includes medical, social, emotional, and practical support.
Palliative care can:
Help improve your quality of life
Reduce or relieve your physical and psychological symptoms
Help you have a more peaceful and dignified death
Support your family and those you care for while you are dying and afterwards
Palliative care is not the same as hospice care and can start before a terminal diagnosis if a person is suffering from a serious illness (more on hospice HERE).
Palliative care can be provided in a variety of settings including: at home, hospitals, long-term care facilities, and hospices.
The types of services to improve quality of life that may be provided include:
Pain management
Symptom management, such as: nausea, anxiety, depression, difficulty breathing
Personal support services
Social, psychological, spiritual, and emotional support
Caregiver support
In Canada, palliative care is covered by provincial health care systems. It can be accessed through a primary health care provider, local community care services, a hospital, or long-term care home.
In the U.S., palliative care can be provided in hospitals, nursing homes, outpatient palliative care clinics and certain other specialized clinics, or at home. Medicare, Medicaid, and insurance policies may cover palliative care, veterans may be eligible through the Department of Veterans Affairs, and private health insurance might pay for some services. The National Hospice and Palliative Care Organization can help find palliative care across the U.S.
In the UK, end of life care is support for people who are in the last months or years of their life. End of life care aims to help people to live as well as possible until death and help one die with dignity. The NHS website can help you search for a provider.
You can also educate yourself with the Last Aid program. This global movement began in Germany and it offers a free three-hour online program that covers care at the end of life, advance care planning and decision making, symptom management, and the cultural aspects of death and bereavement. Upcoming sessions in North America sponsored by Hospice Palliative Care Ontario can be found HERE.
If palliative care seems like the right option for you or a loved one, here are ways to start the process:
Talk to your doctor: Let your doctor or health care team know that you are interested in palliative care and ask for a referral.
Find a palliative care provider: Ask for a recommendation for a palliative care doctor or facility. You can also search online for providers in your area.
Schedule an appointment: Once you have found a palliative care provider, schedule an appointment to discuss your needs, symptoms, and to develop a plan of care.
Understand the services offered: Palliative care can include medical, social, emotional, and practical support. It can be provided in different settings such as in hospitals, hospices, nursing homes, or at home; and by various teams including doctors, nurses, social workers, chaplains, and other specialists.
Understand insurance coverage: Make sure to understand your health insurance coverage and what it covers before starting palliative care. Some insurance plans in the U.S. may require pre-authorization before covering palliative care.
Communicate with your healthcare team: Palliative care is a team effort and it is important to communicate with all members of your healthcare team including your primary care physician, palliative care team, and any other specialists you may be seeing as it may impact other treatments.
It can be hard to know how close one is to the end. Doctors and healthcare workers cannot always make precise predictions so one way to get a better sense of where things are at is to ask, “Would you be surprised if a patient was alive in # days/weeks/months?”
Another method is the Palliative Performance Scale (PPS) - a tool used in palliative care to assess a patient's functional status and overall performance in activities of daily living. It is used to monitor changes in a patient's health status and to guide decision-making about appropriate care interventions. The PPS measures a patient's functional status on a scale of 0 to 100 percent, divided into 10 percent increments, with higher scores indicating better functioning. The PPS assesses a patient's ability to perform tasks such as feeding, dressing, mobility, and cognition, as well as their level of consciousness and overall well-being.
Resources:
This article is not intended to be a substitute for professional medical advice or diagnosis. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition.