Dementia at End-ofLife

As a fervent advocate for quality care for all persons with life-limiting illnesses, The Virginia Association for Hospices and Palliative Care (VAHPC) believes that the principles of palliative care (comfort and improved quality of life) must be included in patient-centered care for people with dementia. At all stages of the disease’s trajectory, aggressive symptom management should be directed at comfort and improved quality of life. When people move towards the end of life, hospice care is appropriate whether it is provided at home, in specialized hospice centers, long-term care facilities, assisted living facilities, or hospitals.

VAHPC believes that all have the right to control decisions regarding their health care across the continua of life and illnesses. Advance directives ensure that those decisions are respected, and Virginia law provides that individuals who may become incompetent through illness shall be 
provided the legal right to choose how they want to be cared for as the end of their lives draw near.

Dementia represents a special challenge for patients, families, and healthcare providers. The progression of dementia is unlike that of most chronic diseases. Rather than the typical steep decline of cancer for example, the progression of dementia is punctuated by declines caused by acute illnesses that are often accompanied with delirium and reduced functional status. These acute illnesses present complex treatment decisions for families and healthcare providers.

Recurring illness episodes often contribute to underestimating the need for palliative care for individuals with dementia whose conditions become terminal. Thus, many people with advanced dementia die with feeding tubes in place and inadequate pain relief.

While understanding that the disease course of dementia varies from patient to patient, we recognize that the time of implementing palliative and hospice care will differ from individual to individual. We also recognize that the clinical markers in current usage do not always accurately predict six month life expectancy making timely referral to hospice more problematic. However, health care providers have an obligation to engage families in discussions about advanced illness management and its associated painful decisions. These discussions should be introduced when a patient is diagnosed with dementia and then reintroduced as the disease progresses. Discussion should involve as many family members as possible, thus preparing the patient and loved ones with an agreed-upon course of care.

We believe that palliative and hospice care is appropriate for people with dementia, when families weigh the evidence of disease progression and when the patients’ wishes in their advance directives. Therefore, we recommend the following:

  • That the cognitive, communication, functional and behavioral problems that arise in dementia are not allowed to become barriers to the appropriate provision of palliative and hospice care;
  • That healthcare providers and families guide discussions about patient care consistent with the patient’s prior wishes, the agreed-upon goals of therapy, and the potential benefits and burdens of treatment options;
  • That pain be evaluated using a broad-range of assessment techniques, including reports by the patient’s care caregiver, physical assessment including objective and nonverbal indicators of pain, and a determination of underlying causes of pain;
  •  That healthcare providers continually evaluate caregivers’ needs for help with the emotional and physical strain of care-giving, and the ongoing challenge of grief; and
  • That healthcare providers institute evidence-based palliative care measures to include pain relief and disease appropriate treatment for the acute illness that characterize the progression of dementia.

 Finally, VAHPC advocates for a public policy discussion on challenges to hospice and palliative care for individuals with dementia. Currently Medicare reimburses for hospital care for an acute illness, rehabilitative care for the acute episode in long-term or skilled nursing facilities, and a period of home nursing after the acute illness episode. Families are often forced by financial considerations to choose the nursing home benefit (in spite of its focus on rehabilitation) rather than choosing a palliative approach (which is not covered by Medicare). Consequently, federal financial incentives work directly against the provision of palliative care. Long-term care facilities and hospitals are not reimbursed at a rate sufficient to provide the more intensive interdisciplinary team involvement required for palliative and hospice care. Therefore, the financial incentives drive decisions that lead to less appropriate hospice and palliative care and more hospitalization for patients with advanced dementia.3 VAHPC believes the discussion should be focused on realigning Medicare reimbursement policies for people with dementia.