When Decision-Making Is Imperative: Advance Care Planning for Busy Practice Settings

Editor's Notes

1. Opportunities to engage in advance care planning occurs throughout the natural history of serious illness such as COPD, HF, dementia, or cancer, as depicted in the figure. Advance care planning is a process whereby individuals think about their values and care preferences; consider what types of care they would and wouldn’t want in different medical situations; and discuss their preferences with their loved ones and health care professionals. As part of advance care planning, people can document their care preferences in a living and designate a health care agent through a Durable Power of Attorney for Healthcare. Upon initial presentation which is often accompanied by a hospitalization, one can introduce the concept of an advance care plan and provide resources for its completion. With progressive illness indicated by disease exacerbations with ED visits/hospitalizations, additional opportunities exist to educate around natural disease progression, discussion of wishes and values, and completion of an advance care plan. As a patient approaches the end of life, advance care planning includes conversations about the benefits of hospice. Taken together, research and clinical experience documents that advance care planning helps ensure the care provided to patients is concordant with their wishes and values. As a side note, the Patient Self-Determination Act (PSDA), federal legislation enacted in 1990, requires institutional healthcare providers who participate in the Medicare and Medicaid programs to provide patients with information about advance directives as well as whether or not the patient has executed an advance directive.
2. In end-of-life conversations, we always say “What if?” Some people may ask, “What if we are taking away hope or causing anxiety in patients because of these conversations?” In this study, and in most cases, these fears are unfounded. We understand based on these outcomes that end-of-life discussions give control back to patients. The study concluded: • End-of-life discussions give back control to patients and therefore offer hope • End-of-life discussions are not associated with physiological distress in patients compared to those who do not have end-of-life discussions End-of-life discussions are associated with: • 2x increased likelihood for a patient to accept their diagnosis as terminal • 3x more likely to complete a DNR • Almost twice as likely to complete a power of attorney compared to patients who don't have end-of-life discussions The timeliness of the discussion is important, as the patient should be in the best cognitive status with capacity to really advocate for themselves in this decision-making process.
3. When we examine outcome measures based on these conversations, we find some positive results: • End-of-life discussions helped patients receive care associated with a better quality of life and death • End-of-life discussions reduced: – Intensive care unit (ICU) admissions by 65% – Ventilator use by 74% – Resuscitation by 84% • Incidences of patients receiving outpatient hospice care for greater than 1 week increased 1.6 times compared to those who did not have end-of-life discussions Without end-of-life and goals-of-care discussions, we take away patients’ ability to make informed care decisions.
4. Key transition points e.g., hospitalizations, ICU admission, rehab, skilled care, home health, hospice, etc.
5. Another study, this one at the University of North Carolina in Chapel Hill, compared PPS scores and patient survival. Remember that our patient, RA, has a PPS of 40. Each line on the graph indicates a PPS score up to 50, with correspondent survival on the Y axis. A poor PPS score supports a poor prognosis, with a PPS of 50 indicating average survival of 50% at about 6 months. Similar findings between PPS score and mortality have been found in hospice populations.
6. Patients with dementia typically have a protracted course with a life expectancy of 4 to 6 years after diagnosis. As the disease progresses and the patients near the end of life, their functional dependency and disease-related complications increase. These changes often support the need for a hospice evaluation, with eligibility defined as a prognosis of 6 months or less if the illness runs its normal course. Dementia-related functional dependency that supports hospice eligibility is defined as being dependent in 3 of 6 activities of daily living, or ADLs, which include eating, bathing, dressing, continence, toileting, and ability to move one’s self (ambulation). These changes in functional dependency in ADLs appear in conjunction with a disease-related complication, such as difficulty eating or pneumonia.
7. Facilitator explains/reviews the top portion of the graph and then explains that they are now going to review the different Levels of Care hospice offers on the next slide.
8. Hospice care is based on an interdisciplinary team, with nurses, social workers, chaplains and physicians directing, providing and coordinating care for the patient Additional team members include hospice aides, volunteers, therapists, and other healthcare providers. The patient and family are a part of the team and are involved in the patient care process. They provide direction to the team regarding what types of interventions and care they want, as well as those interventions that they do not want. In describing this team, the word PROACTIVE approach comes to mind. hospice cares for the entire patient, addressing physical, psychosocial, spiritual, emotional, social and financial issues using both pharmacologic and non-pharmacologic interventions. Just imagine the amount of clinician visits these patients receive in their home setting. During each visit each clinician is proactively monitoring symptoms, providing medication reconciliation and education which in turn helps with the symptom burden that will usually send a patient back to the ED. Every patient in hospice is under the care of the hospice physician on their care team. The hospice doctor works with the patient’s preferred doctor, who can choose the level to which they wish to participate. The hospice physician closely monitors the progression of the patient’s illness and prescribes appropriate medications and healthcare directions to the other members of the team. Hospice nurses are skilled in assessing and managing a patient’s pain and symptoms. They are also trained caregivers who, like a visiting nurse, provide hands-on care to the patient. Skilled listeners, hospice nurses comfort the family while also teaching them how to take the best care of their loved one. Hospice aides are certified nursing assistants who provide personal care to the patient, such as bathing or mouth care. They are also available to family caregivers to help relieve their burden by participating in activities such as laundry and light housekeeping. Hospice social workers provide emotional and psychosocial support to the patient and family. They coordinate the logistics of the patient’s care and helping with finances, funeral planning or whatever is needed. They are always available to lend a friendly and listening ear. Hospice volunteers are specially trained in hospice and end-of-life issues to provide compassionate company for patients and families or to help facilitate their care. Volunteers are an important part of hospice; their duties can range from visiting patients to crafting patient items to helping in the office. Regardless of a person’s beliefs or nationality, hospice chaplains are available to address the spiritual issues that often arise as a patient nears death. The hospice chaplain is there for the patient and the family and honors the cultural traditions and values they hold dear. When requested, the hospice chaplain works with the patient’s clergy.