Palliative care is specialized medical care for people living with a serious illness. It focuses on providing relief from symptoms and stress of the illness. The goal is to improve quality of life for both the patient and their family.
When is palliative care appropriate?
Palliative care is appropriate at any age and at any stage in a serious illness, and it can be provided together with curative treatment. It is not dependent on a specific prognosis and can be provided early in the course of treatment for a chronic condition. Some appropriate times to start palliative care include:
- At diagnosis of a serious chronic or progressive illness that may limit life expectancy like cancer, COPD, heart failure, dementia, Parkinson’s disease, ALS, multiple sclerosis, or kidney disease.
- When living with multiple chronic conditions that have a significant impact on quality of life and function.
- When a health condition is causing bothersome symptoms or emotional distress.
- When curative treatment is no longer working or feasible.
- When curative treatment may be too burdensome given the risks and limited benefits.
- During transitions between care settings such as being discharged from the hospital.
What are the benefits of earlier palliative care?
Research has shown that introducing palliative care earlier in the course of a serious illness has many benefits for patients and families. These benefits include:
- Better quality of life and ability to function.
- Less depression, anxiety, and distress.
- Better understanding of the illness and treatment options.
- Reduced hospitalizations and need for aggressive treatments near death.
- Better coordination of care between different providers.
- Support for family caregivers and shared decision making.
- Potentially even living longer.
When should palliative care start for cancer?
For patients with cancer, multiple expert groups recommend early integration of palliative care. Some specific guidelines include:
- The American Society of Clinical Oncology recommends combined standard oncology care and palliative care within 8 weeks of diagnosis for any patient with metastatic cancer or a high symptom burden.
- The National Comprehensive Cancer Network guidelines advise offering palliative care early in the course of any serious or complex illness for cancer patients, ideally within 3 months of diagnosis.
- The National Consensus Project for Quality Palliative Care notes palliative care is appropriate for cancer patients at initial diagnosis and should be integrated with curative and life-prolonging therapies.
Evidence clearly shows palliative care improves quality of life, mood, and in some cases survival when provided early after a cancer diagnosis along with cancer treatment. It may be especially helpful at transitions in care such as when finishing up chemotherapy or radiation therapy.
When does palliative care start for heart failure?
Major guidelines recommend early palliative care for patients with heart failure. Recommendations include:
- The American College of Cardiology Foundation/American Heart Association guidelines recommend palliative and supportive care be introduced early and integrated with other therapies for symptomatic heart failure.
- The Heart Failure Society of America advises starting palliative care at diagnosis of advanced heart failure or when experiencing persistent or worsening symptoms.
Early palliative care has been shown to improve quality of life, reduce depression, and lower hospitalizations for patients with heart failure. It may start when heart failure is initially diagnosed or anytime symptoms get worse.
When should palliative care start for dementia?
Leading dementia care guidelines uniformly advise early integration of palliative care principles. Recommendations include:
- The American Academy of Neurology recommends introducing palliative care concepts at dementia diagnosis and over the course of the illness as needs evolve.
- The National Institute on Aging encourages palliative care following a diagnosis of mild cognitive impairment or early-stage Alzheimer’s disease and dementia.
Palliative approaches focus on quality of life and managing symptoms while going through the ups and downs of dementia. Palliative care may be especially helpful during the middle stages when behavior and psychiatric symptoms often emerge and function deteriorates.
When does palliative care start for COPD?
Major chronic obstructive pulmonary disease (COPD) guidelines uniformly recommend early palliative care integrated with standard therapies. This includes:
- The Global Initiative for Chronic Obstructive Lung Disease advises that all patients with advanced COPD should receive palliative care.
- The American College of Chest Physicians and American Thoracic Society recommend introducing palliative and end-of-life care along with COPD diagnosis and treatment conversations.
Palliative care has been shown to enhance quality of life and reduce acute care utilization for COPD patients. It may provide particular benefit during acute exacerbations or when oxygen therapy is started as the illness progresses.
When should palliative care start for kidney failure?
Kidney palliative care guidelines recommend the following regarding when to initiate palliative care:
- The Renal Physicians Association advises nephrologists to initiate palliative care discussions with advanced chronic kidney disease patients at least 12 months before the expected start of dialysis.
- The National Kidney Foundation recommends an integrated approach between palliative care and dialysis care upon diagnosis of Stage 4 or 5 chronic kidney disease.
Early integrated palliative care and dialysis care has been shown to enhance patient-centered planning and decision making. Palliative care provides support through the ups and downs of living with kidney failure.
When does palliative care start for ALS?
The American Academy of Neurology guidelines for ALS management recommend:
- Referral to palliative care and hospice should occur within 3 months of diagnosis or when patients develop symptoms signaling disease progression.
- Discussions about palliative care options are appropriate soon after diagnosis and alongside disease-modifying treatment.
ALS progresses rapidly, and palliative care started early alongside ALS treatments can help manage symptoms and establish goals of care as the disease advances.
When should palliative care start for Parkinson’s disease?
Expert reviews suggest:
- Palliative care principles should be applied early in Parkinson’s disease and integrated throughout the course of the neurodegenerative disease process.
- A palliative approach focuses on function, comfort and quality of life as Parkinson’s symptoms worsen over time.
Palliative care provides an extra layer of support for Parkinson’s patients, especially those with complex medication regimens, loss of function, pain, anxiety or cognitive issues.
When does palliative care start for multiple sclerosis?
Reviews on optimizing symptom management and quality of life in multiple sclerosis propose:
- A palliative approach should be integrated from the time of diagnosis and emphasized as MS progresses.
- Palliative care helps manage complex, chronic issues like pain, fatigue, depression, cognitive changes, disability and loss of function.
MS symptoms and progression are highly variable, so palliative care should be flexible in addressing evolving issues over the disease course based on each patient’s needs.
When should palliative care start for children?
Guidelines from the American Academy of Pediatrics state:
- Children with any serious illness should be offered palliative care early in the disease process coordinated with disease-directed therapies.
- Palliative care may begin at initial diagnosis or any time a child develops distressing symptoms over the course of illness.
Palliative care helps provide relief from symptoms and stress while maintaining the best possible quality of life for children with chronic, complex and life-limiting conditions.
When should palliative care start for the elderly?
Geriatrics organizations recommend:
- Palliative care should be considered early for elderly adults living with serious or multiple chronic illnesses and geriatric conditions associated with high symptom burden.
- Palliative approaches often focus on function, complex symptom management and aligning care with patient goals as conditions progress.
Palliative care provides an extra layer of support for seniors, especially during frailty, loss of function, dementia, falls, and other sources of distress. It helps enhance comfort and daily quality of life.
When does palliative care transition to hospice care?
Palliative care and hospice care have similar aims of improving quality of life and relieving suffering, but hospice care is specifically for those at the end of life:
- Palliative care can be provided at any stage of an illness alongside treatment.
- Hospice care begins after treatment is no longer effective and life expectancy is 6 months or less.
The transition from palliative care to hospice often occurs when restorative or life-prolonging treatments are stopped and the focus shifts entirely to comfort for the remainder of life.
What are the criteria for hospice care?
The criteria for Medicare hospice benefits include:
- Prognosis of 6 months or less if the terminal illness runs its normal course
- Patient agrees to palliative rather than curative care
- Services are provided by a Medicare-approved hospice agency
- A hospice doctor and hospice team oversee care
Similar criteria often apply to other insurance coverage. Hospice care can take place at home or in hospice residential facilities.
How is the 6-month hospice prognosis determined?
Determining an approximate 6-month prognosis involves the clinical judgment of the medical team caring for the patient. Factors considered may include:
- The patient’s primary terminal diagnosis and related comorbidities
- Current disease status and trajectory
- Functional status and performance
- Nutritional status and weight loss
- Symptom prevalence and severity
There are no specific lab values, scores or formulas that definitively determine a 6-month prognosis. It is based on the clinical scenario and overall decline in health.
What is included in hospice care services?
Hospice care includes the following services covered by Medicare and most insurance plans:
- Nursing care
- Medical equipment and supplies
- Medications for symptom control and pain relief
- Short-term inpatient care for symptom crises
- Home health aide and homemaker services
- Spiritual and grief counseling
- Volunteer assistance
The focus is entirely on comfort, quality of life, and family support during end-of-life care.
Conclusion
In summary, palliative care may be appropriate at any point in an illness when symptom relief and improved quality of life could benefit the patient. Early integration of palliative care alongside disease treatment is now recommended for most serious chronic conditions. The transition specifically to hospice care is based on a prognosis of 6 months or less and occurs when restorative treatment is no longer helpful. Palliative and eventually hospice services enhance comfort, function and support throughout the course of illness.