End-of-Life Palliative Care
Palliative care improves quality of life for older patients, supports family members, and reduces unnecessary medical expenditures.
Known as the gray tsunami, the aging population of 39.6 million in 2009 is estimated to expand to more than 72 million by 2030,1 most of whom will develop at least one chronic illness, such as cancer, heart and respiratory diseases, diabetes, and Alzheimer’s disease.2 As aging and chronically ill Americans attempt to navigate the health care system, they encounter a complex, fragmented, and confusing system that often leads to gaps in patient care and a domino effect that reduces patient quality of life, comfort, and quality of care.
Not only are the chronically ill suffering needlessly; they are also driving up health care costs stemming from hospital readmissions, unnecessary emergency department visits, and unwanted or futile care. In fact, 30% of all Medicare expenditures are attributed to individuals who are in the last year of life.3
But end-of-life care doesn’t need to involve extensive treatment, hospitalization, or tremendous medical costs.
• Goals of Care: Working with individuals and families to identify goals of care and aligning care plans with an individual’s values and preferences for treatment;
• Advance Directives: Supporting end-of-life decision making and completion of advance directives;
• Psychosocial and Spiritual Support: Providing individuals and families ongoing psychosocial and spiritual support; and
• Symptoms: Managing distressing symptoms.
Palliative care offers aspects of care that are ideally suited for older adults. By relieving symptoms, pain, and the stress of serious illness, palliative care improves quality of life for older patients, their families, and caregivers. Other measurable benefits of palliative care include the following:
• increased patient and family satisfaction with the provider and/or facility;
• increased utilization of and adherence to advance care planning;
• reduced rehospitalization;
• reduced incidence of uncontrolled pain, unaddressed anxiety, and depression;
• increased timely referral to palliative care and hospice, when indicated; and
• reduced deficiencies in end-of-life care and hospice/coordination of care.
His daughter suggested they meet with a palliative care specialist. Carl, however, expressed some reservations. He believed that palliative care meant hospice, and he wasn’t ready to resign himself to that. But rather than disappoint his daughter, he agreed to keep the appointment that would allow him to explore what palliative care could offer.
The palliative care physician immediately put Carl at ease. She listened intently, answered his many questions, and explained the options for care. Carl was especially surprised when early in their meeting, the physician inquired, “What are your goals?” No one had previously asked for his input. With tears in his eyes, Carl told the physician that he’d like to live as long as he could with the best possible quality of life. He wanted to get to know his two grandsons. For the first time since his diagnosis, Carl felt as though someone saw him as a person and not simply a disease.
With Carl’s goals in mind, the physician developed a care plan designed to control Carl’s symptoms. She reviewed his medications, eliminating prescriptions that failed to ease Carl’s pain or other symptoms, and worked with Carl’s oncologist to adjust his chemotherapy regimen and introduce palliative radiation treatments that would ease his physical pain. A nurse from the palliative care team checked in with Carl routinely, while a counselor helped support Carl and his family through the emotional challenges of Carl’s advancing illness.
Good palliative care provided him many benefits. Carl lived another two years with the best quality of life possible, remaining in his daughter’s home and getting better acquainted with his grandsons.
Delivering Palliative Care
Too often residents “boomerang” through crisis-hospitalization-rehab-readmit-crisis cycles, resulting in distress and suffering for the residents and their families.
Earlier this year, LQI began piloting an innovative palliative care training, coaching, and implementation program within five skilled nursing communities in Denver and Castle Rock, Colorado. “Navigating the Waters of Palliative Care” offered comprehensive in-person education sessions on key palliative care principles including the following:
• Communication skills to better understand and respond to resident needs. Examples include using open-ended questions and phrases such as “tell me more” that encourage residents to share their feelings or concerns; incorporating expressions such as “I can’t imagine what that feels like to be told … how did you feel when you got the news?” to help support residents through the experience of difficult circumstances; practicing reflective listening; and being mindful of physical and nonverbal signs of residents’ pain, discomfort, or distress of physical, psychosocial, or spiritual nature.
• Advance care planning to identify, document, plan, and adjust patients’ medical care to meet the stated goals of each individual. The LQI course guided participants through the process of conducting meaningful advance care planning conversations that identify a patient’s values and goals by exploring the patient’s understanding of his or her current medical condition and its potential future complications; the patient’s experience with recent hospitalizations and other medical treatments; and the patient’s definition of quality of life.
• Effective pain and symptom management starting with an accurate assessment of pain to identify the type of pain a person is experiencing (eg, acute, chronic, somatic, visceral); the degree of a patient’s pain, assessed through the use of tools such as a numeric pain scale or the Wong-Baker Faces scale; and the appropriate pain interventions to identify pharmacological and nonpharmacological therapies.
• The impact of illness on family structure and coordination of care. The onset of serious illness can be one of the most feared and disruptive experiences in family life. Community residents may or may not have contact with individuals they consider family. Interactions between a care team and family members can be strained by myriad factors including a misunderstanding of a resident’s medical condition and the options for care; financial constraints or concerns about the potential financial burden the care may impose; spouses’ or other family and caregivers’ work schedules and obligations to children and other family members; past personal estrangements; and cultural differences.
LQI advises care providers to be mindful of family structures and whether/how family members communicate. LQI suggests that care providers view themselves as facilitators seeking first to understand, and then thinking of ways they can advance the conversation knowing that feelings of fear, tension, anxiety, and frustration are a normal part of the process.
• Support and best bereavement practices such as developing an agreed-upon process by which a community will acknowledge and honor the loss of a resident.
• completion of mortality assessments to identify those residents at highest risk of mortality within the next 12 months. Each community has been encouraged to complete or update Flacker assessments on their residents and to keep a copy of the assessment in each resident’s chart;
• documentation of advance care planning discussions and directives with an emphasis on ensuring that residents have appointed a medical durable power of attorney and medical staff have completed medical orders for scope of treatment for residents who are the most seriously ill;
• documentation of palliative care plans to address pain and symptom management and ease spiritual and psychosocial suffering; and
• more timely referral to specialty palliative care or hospice with LQI providing contact information for local palliative care providers.
Throughout the summer, LQI has collected and analyzed outcome data from each long term care community to assess education effectiveness and identify the areas for additional training and/or coaching. Three anecdotes illustrate the impact LQI’s pilot program is exerting on resident care. For instance, immediately following one of the first programs, a community arranged for a palliative care referral for a resident who was in severe uncontrolled pain. The resident’s pain is now managed more effectively, she is more interactive with staff members, and she is better able to make her needs known. As a result of their training, staff members feel better prepared to recognize when residents are suffering.
In another case, the executive director of a community asked LQI for input and recommendations on social work issues she had observed among patients and their families. As a result, these issues of concern are being effectively addressed.
With its multidisciplinary, holistic approach, palliative care is ideally suited to addressing the needs of the elderly population, many of whom suffer from chronic and debilitating illnesses. Palliative care prevents and relieves suffering through early identification, thorough assessment, and expert treatment of pain and other challenges, including physical, psychosocial, and spiritual concerns. It also supports family members and other caregivers who share patients’ experiences. With its emphasis on quality of life, palliative care improves communication and understanding between patients and care providers. It aligns care with an individual’s values and wishes, thus improving both patient and family satisfaction and reducing unnecessary medical treatments and rehospitalizations.
— Nancy Hallowell is director of operations and development for Life Quality Institute (www.lifequaltyinstitute.org), a Denver-based nonprofit organization dedicated to advancing palliative care through education available to gerontology practices throughout the state of Colorado.
PALLIATIVE CARE FACTS
• By 2020, the number of people living with at least one chronic illness will increase to 157 million. Today, seven of 10 Americans die from chronic disease.
• Approximately 6 million people in the United States could benefit from palliative care.
• Palliative care is specialized medical care focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. 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, and other specialists who work with a patient's other doctors to provide an extra layer of support.
• Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.
• According to a 2010 study in the New England Journal of Medicine, patients receiving early palliative care experienced less depression, had an improved quality of life, and survived 2.7 months longer.
• Illnesses most commonly treated by palliative care are heart disease, cancer, stroke, diabetes, renal disease, Parkinson’s disease, and Alzheimer’s disease.
• People with multiple chronic conditions are likely to be hospitalized during the course of their illness.
• Approximately 68% of Medicare costs are related to people with four or more chronic conditions—the typical palliative care patient.
• If palliative care were fully penetrated into the nation’s hospitals, total savings could amount to $6 billion per year.
• Palliative care growth in hospitals has been exponential. The number of teams has doubled over the last six years. To date, there are more than 1,500 hospitals with a palliative care team.
• Approximately 63% of hospitals with more than 50 beds currently have a palliative care team.
— SOURCE: CENTER TO ADVANCE PALLIATIVE CARE
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3. Barnato AE, McClellan MB, Kagay CR, Garber AM. Trends in in-patient treatment intensity among Medicare patients at the end of life. Health Serv Res. 2004;39(2):363-376.
4. Caffrey C, Sengupta M, Park-Lee E, Moss A, Rosenoff E, Harris-Kojetin L. Residents Living in Residential Care Facilities: United States, 2010. NCHS data brief, no. 91. Hyattsville, MD: National Center for Health Statistics; 2012.
5. National Hospice and Palliative Care Organization. NHPCO Facts and Figures: Hospice Care in America. http://www.nhpco.org/sites/default/files/public/Statistics_Research/2013_Facts_Figures.pdf. October 2013.