Managing Expectations: End-of-Life Care

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Over 835,000 Americans reside in ALFs, and the majority of those are over 85 years-old.  Of note, most claims arise from care issues during the first two weeks or the last two months of residency in an ALF or skilled nursing facility (SNF).  A case analysis illustrated tools for reducing claims and litigation risks relating to end-of-life expectations, including staff training, communication among providers and with families, and documentation policies and procedures.

Case Discussion

A female was admitted to a memory care unit.  Chronic conditions on admission included coronary artery disease, Alzheimer’s dementia, hypertension, hyperlipidemia, and osteoarthritis.  In addition, poor food intake was noted, and she was well below weight for her stature.  Initially the resident was a Full Code status.  During the nine-month ALF residency she had four hospitalizations for falls, respiratory infection, and change in mental status.  Two weeks prior to death, she was changed to DNR/no interventions.  The cause of death included congestive heart failure, myocardial infarction, and coronary artery disease.

Claims against the facility included falls with injury, medication errors, and failure to thrive.  During a deposition, when the daughter was asked about her expectations of the facility on admission, she testified she “didn’t know what to expect.”  She had no discussion with her mother about her wishes regarding care or her prognosis.  She was unaware of her mother’s wishes for end-of-life care.  The daughter stated that the family did not discuss these issues, but added she expected her mother not to have any falls, expected her mother to have rehabilitation, and did not expect her to die.

Why did the daughter file a lawsuit?  The facility knew about her mother’s condition and options and goals were not discussed with the family.  The daughter felt the community over-represented what it could do.  The lawsuit settled for $245,000, with additional costs including, but not limited to, nine months of litigation, the insured’s deductible, defense costs, costs of hospital admission, and hours relative to community human resource costs.  Unquantifiable costs included impact on staff and well-being, cost to the institution, impact on insurance premium, and potential reputational damage to the facility.  “Unmet expectations by residents and family members regarding clinical conditions, prognosis, and the trajectory of illness leads to confusion, anger and dissatisfaction.  When a negative outcome occurs, evidence establishes that families want to blame someone.  These feelings drive decisions about hiring an attorney and pursuing a claim”, says Ms. Adelman.

Tools for Reducing Risk

As evidenced in this case study, realistic expectations for end-of-life care are essential.  The need for clear communication and shared decision-making with the family upon admission to the ALF/SNF can improve satisfaction and the grief process.  It was noted that 90% of DNRs are put in place by surrogates, as many residents are in cognitive decline.  Discussing and documenting EOL issues and plans with residents and families ensures patient centered care, which may include palliative care and hospice care.  Ms. Adelman adds that “By understanding and managing expectations along the continuum of care, not only is risk mitigated but residents, families and staff experience better end-of-life care and are more fulfilled.”

Palliative and Hospice Care in Senior Living

Ms. Adelman stressed the importance of communicating the differences between palliative and hospice care to the resident’s family.  While each of these options focus on quality of life and symptom relief, palliative care is available as soon as a long-term diagnosis is received.  Hospice care, which is a type of palliative care, is available to anyone with a terminal illness whose doctor determines they have less than six months to live.

Palliative care is a resource for patients living with a serious, long-term illness.  The intent is to improve the quality of life through symptom management and can be provided along with curative treatments.  The palliative care team is multidisciplinary and includes the patient, family, doctors, nurses, social workers, nutritionists, chaplains, and others to assist in providing social, emotional, and practical support.  Palliative care can be provided in any setting.

In instances when hospice care is initiated, the Centers for Medicare & Medicaid Services (CMS) has clear guidelines on creating and coordinating successful plans of care.  The CMS Fact Sheet states “The primary goal of hospice care is to meet the holistic needs of an individual and his/her caregiver/family for whom curative care is no longer the preferred option. To support this goal, the hospice provider develops an individualized plan of care (POC), established by an Interdisciplinary Group (IDG) and overseen by a Registered Nurse (RN) coordinator.”


Medicare requires that the Hospice Plan of Care include the following elements:

  1. Interventions to manage pain and symptoms
  2. A detailed statement of the scope and frequency of services necessary to meet the specific patient and family needs
  3. Measurable outcomes anticipated from implementing and coordinating the POC
  4. Drugs and treatments necessary to meet the needs of the patient
  5. Medical supplies and appliances necessary to meet the needs of the patient
  6. The IDG documentation of the patient’s or representative’s level of understanding, involvement, and agreement with the POC, in accordance with the hospice’s own policies, in the clinical record

The Social Security Act requires that hospices submit data through the Hospice Item Set, which in turn is publicly reported through the Hospice Quality Reporting Program. Even if a resident is not covered by Medicare, documentation guidelines, which provide a clear picture of the patient’s condition and symptoms to support the terminal prognosis, are applicable.

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False Claims Acts

Although not discussed in this presentation, facilities must also be cognizant of the appropriate use of hospice.  The Department of Justice has filed multiple cases under the False Claims Act with allegations including:

  • Admitting patients not hospice appropriate
  • Maintaining patients not actively dying
  • Kickbacks to physicians to bolster referrals
  • Categorizing patients in higher intensity levels (i.e. General Inpatient Care @ $1,045.66/day vs. Routine Home Care @ $199.25/day)

Documentation plays a key role in these cases.  In audits conducted by Excelas, red flags included:

  • No certification present or initial certification not performed in a timely manner
  • Subsequent/recertifications not timely
  • Physician narrative statement not present or valid
  • No plan of care
  • Face to face requirements not met
  • No certification for dates billed

While the 11th Circuit Court of Appeals agreed in September of 2020 that a difference of physician’s opinions on a terminal patient’s prognosis does not indicate falsity under the FCA, there have been other cases which have allowed a jury verdict.  Consistent documentation is key to the defense.

Barriers to Setting Expectations for EOL Care

Several barriers to setting clear expectations with residents and family members were identified and included:

  • Lack of training of staff – to recognize the need for palliative/hospice care
  • Lack of a standardized assessment of terminal status
  • Communication gaps – among professional staff and with resident/family
  • Lack of access to hospice services
  • Issues created by joint management – including outside hospice providers
  • Issues created by transitions across care settings
  • Other delivery system issues


These elements of an individualized plan developed by a team, including key caregivers/family members with a designated person for oversight, can facilitate establishing realistic expectations upon admission for all residents of an ALF/SNF, not only those on hospice.  Facilities should have procedures regarding:

  • Where documentation of the end-of-life discussion is found in the records (admission documents, care planning section)
  • What is included in the documentation (e.g., EOL care options, patient wishes)
  • Who is responsible for the EOL discussion (e.g., PCP, nursing, admission counselor, social services, case manager)
  • Training for all staff on EOL issues and protocols

In the case study above, had these steps been initiated upon admission to the ALF, the resident’s daughter would have been involved in the decision-making and planning, and would have known “what to expect” as her mother’s condition progressed.  As noted earlier, with many claims occurring in the first two weeks of residency, facilities need to emphasize early discussions with the resident and family rather than waiting until the resident’s health prompts discussions.  Setting expectations early improves quality of care/quality of life, family satisfaction, staff recruiting and retention, and reduces risk liability.

For more information on “Expectations Management Program for Long-Term Care Communities”,

Ms. Adelman can be reached at [email protected].

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