What is palliative care?
Palliative care is specialized medical care for people living with a serious illness. It focuses on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, social workers and other specialists who work together with the patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.
When is palliative care appropriate?
Palliative care may be appropriate at any age and any stage of a serious illness, from diagnosis on. It can be provided at the same time as treatment that aims to cure the disease. For example, palliative care can help manage pain, nausea, fatigue and other symptoms during cancer treatments and can help with decision making.
Some examples of when palliative care may be helpful include:
– At diagnosis of a serious illness like cancer, heart failure, COPD, kidney disease, Alzheimer’s, etc. It can help with symptom management and complex decision making.
– During treatment like chemotherapy, radiation, surgery – to manage side effects and stress.
– To help with transitioning from hospital to home.
– To address emotional/psychological aspects of coping with serious illness.
– For symptom management during chronic or progressive illnesses like dementia, Parkinson’s, ALS.
– At any point when curative treatment is no longer working.
– At end of life to help provide comfort, pain relief.
So while palliative care is very helpful for people nearing end of life, it is appropriate at many points earlier in an illness as well.
Does palliative care mean giving up?
No, palliative care does not mean giving up. The goals of palliative care are to improve quality of life and help patients get the most benefit from medical treatment. Palliative care teams have specialized skills in pain and symptom management that can help reduce suffering and side effects. This allows some patients to continue to pursue and benefit from curative and life-prolonging treatments if they wish. The additional support from palliative care helps enhance daily life and activities.
Palliative care also focuses on goals of care discussions – clarifying what matters most to the patient. This helps guide decision making about current and future medical interventions aimed at cure versus comfort. The patient determines the priorities and direction. Palliative care aims to provide an extra layer of support no matter the decisions. It does not mean stopping all interventions or “giving up”.
When should I ask about palliative care?
Palliative care is appropriate at any point during a serious illness – it may be helpful to ask for a palliative care consult early on to help establish ways to manage symptoms and side effects. Consider asking your health care providers about palliative care if experiencing:
– Pain, nausea, loss of appetite, fatigue or other symptoms causing distress
– Emotional stress – anxiety, depression, feeling overwhelmed
– Difficulty coping or adjusting to an illness or cancer treatment
– Discharge from hospital with complex care needs
– Trying to decide whether to continue treatments focused on cure
– Living with a chronic progressive illness like COPD, kidney disease, Parkinson’s, dementia
– Advanced cancer or other progressive life-limiting illness
Your health care providers may also recommend a palliative care consultation. You can decline or postpone if you don’t feel ready. Palliative care can be integrated a little at a time – you don’t have to suddenly stop other treatments. Instead try thinking of palliative care as an extra layer of support when living with any serious illness.
What can I expect from palliative care?
Palliative care aims to improve quality of life and relieve suffering. It provides an extra layer of support for you and your family. It does not replace the care from your other doctors.
Some examples of what you can expect from the palliative care team:
– Expert pain and symptom management
– Help coordinating care and communicating with other providers
– Support with complex decision making
– Assistance navigating healthcare issues and systems
– Emotional and psychological support
– Guidance on care planning and setting goals
– Assistance with discharge planning and transitions
– Support for family members and caregivers
– Referrals to community resources and support systems
The palliative care team will get to know you, your priorities and your situation so they can provide comprehensive customized care focused on improving your quality of life.
Myths and misconceptions about palliative care
There are some common myths and misconceptions about palliative care. Understanding the facts can help you know if and when palliative care may be helpful for you or your loved one.
Myth: Palliative care is just for people at end of life.
Fact: Palliative care can be helpful at any stage of illness – it is not limited to end of life. It can be provided alongside treatments focused on cure.
Myth: Palliative care means you have given up on treating the disease.
Fact: Palliative care can enhance ability to undergo treatments and improve quality of life. The patient continues to determine the right treatment course for them.
Myth: Asking for palliative care will take away all other treatments.
Fact: Palliative care works with your other doctors – it does not mean stopping all other treatments or interventions. It provides an extra layer of support no matter what stage of illness or treatment decisions.
Myth: Palliative care is just for cancer patients.
Fact: Palliative care is helpful for anyone with a serious illness, including heart, lung, liver and kidney disease, dementia, ALS, multiple sclerosis, etc.
Myth: If I feel fine, I probably don’t need palliative care.
Fact: Palliative care can help manage symptoms before they start significantly impacting quality of life. It also helps with difficult decision making regarding treatment options.
Myth: Palliative care is only for older adults nearing the end of life.
Fact: Palliative care is appropriate for any aged individual with a serious illness. Some specialized pediatric palliative care teams care for babies, children and teens.
Understanding what palliative care involves can help overcome misconceptions about needing to be near end of life before receiving palliative care. It provides important support that can improve quality of life starting at diagnosis of any serious illness.
What are the benefits of palliative care?
There are many benefits that palliative care can provide to patients and families when facing a serious illness. Some examples include:
Symptom management
– Provides relief from distressing physical symptoms such as pain, nausea, shortness of breath
– Can help reduce side effects from treatments like chemotherapy
Stress reduction
– Addresses psychological symptoms such as anxiety, depression, feeling overwhelmed
– Social worker and mental health support
Improved understanding
– Explains illness and treatment options to make informed choices
– Guidance on navigating health care system
Care coordination
– Integrates care between multiple specialists and settings
– Transitions between hospital and home
Emotional support
– Counseling for patient and family
– Coping strategies and guidance
Advanced care planning
– Clarifying goals, values, priorities
– Completing advance directives
Caregiver support
– Guidance, respite, resources for caregivers
– Addresses caregiver stress
Palliative care can lead to improved quality of life, better symptom management, less depression, and avoidance of unnecessary hospitalizations. Many patients are able to continue treatments focused on cure longer with enhanced palliative care support.
What is the difference between palliative care and hospice?
Palliative care and hospice are both focused on comfort and quality of life. However, there are some key differences:
Palliative Care
– Can be provided at any stage of serious illness alongside curative treatment
– Aims to relieve symptoms and provide support alongside primary treatment
– Patients continue seeing their primary medical team
Hospice
– For patients with terminal prognosis of 6 months or less
– When life-prolonging treatment is no longer desired
– Care supervised by the hospice medical team who become primary providers
While hospice is a type of palliative care focused on end of life, palliative care can be provided much earlier in an illness without needing to stop other treatments. Some key points of distinction:
– Palliative care does not require a 6-months-or-less prognosis
– Palliative care does not require discontinuing disease treatments
– Palliative care allows you to continue seeing your regular medical providers
– Hospice requires transitioning the hospice team as the primary providers
So while hospice is a more intensive form of palliative care for end of life, palliative care services are appropriate much earlier. They complement primary treatment and do not mean stopping life-prolonging care.
How to talk to your health care provider about palliative care
It can feel difficult to bring up palliative care with your health care provider. Here are some tips for having this important conversation:
– Ask questions to learn more about palliative care. “Could you tell me more about palliative care and how it could help me?”
– Explain your symptoms and challenges. “I’ve been having a lot of pain and nausea from my treatment. I think palliative care could help provide some relief.”
– Ask about integrating palliative care early. “I was reading palliative care may be helpful starting at diagnosis. Do you think that’s something I could benefit from?”
– Emphasize you still want primary treatment. “If I started palliative care now, I could still proceed with the chemotherapy, right?”
– Explain your overall goals. “I want to be sure I can keep teaching as long as possible. Could palliative care help me do that?”
– Ask for a consultation. “Would you arrange a palliative care consult for me?”
Remember palliative care aims to improve your quality of life at any stage of illness. Speaking up to request palliative care helps you receive comprehensive support focused on the aspects of life that are meaningful to you.
Conclusion
Palliative care provides an important extra layer of support for anyone living with a serious illness. It helps relieve suffering and improve quality of life. Palliative care is appropriate at any age and any stage of illness – it does not mean end of life or stopping treatments aimed at cure. Some of the major benefits are expert symptom management, emotional support, coordinating care, and aligning treatments with patient and family goals. Palliative care works together with primary doctors to enhance the lives of patients and families facing serious illness. Understanding the comprehensive benefits of palliative care can empower patients to seek this support early on to help navigate their health challenges.
