Palliative care of advanced dementia

Palliative care of advanced dementia A patient centered approach
By:VJ Periyakoil, MD
Director, Palliative Care Fellowship Program
Stanford University General Internal Medicine &
VA Palo Alto Health Care System


Main Message
* Currently, patients with dementia do not get access to quality palliative care
* Access to quality palliative care can be facilitated only if we take an inter-disciplinary approach to care


Talk Agenda
* Current state of palliative care for dementia
* Key challenges in providing palliative care for dementia patients
+ Prognostication
+ Decision making
+ Advance care plan
+ Symptom management
+ Caregiver stress

Prognostication questions in dementia
* Patient’s question: “How long do I have before my mind is shot?”
* Health professional’s question: “ Is s/he eligible for palliative care?”
* Family’s question: “How long does s/he have to live ?”
* Caregiver’s question: “ I am exhausted. How much longer can I do this?”

Is dementia a terminal illness? If so, when do they start dying?

Dementia hospice eligibility
* Stage 7 or beyond according to the FAST scale
* Unable to ambulate without assistance
* Unable to dress without assistance
* Unable to bathe without assistance
* Urinary or fecal incontinence, intermittent or constant
* No meaningful verbal communication, stereotypical phrases only, or ability to speak limited to six or fewer intelligible words
* Plus one of the following within the past 12 months:
o Aspiration pneumonia
o Pyelonephritis or other upper UTI
o Septicemia
o Multiple stage 3 or 4 decubitus ulcers
o Fever that recurs after antibiotic therapy
o Inability to maintain sufficient fluid and calorie intake, with 10 percent weight loss during the previous six months or serum albumin level less than 2.5 g per dL (25 g per L)

Schonwetter RS, Han B, Small BJ, Martin B, Tope K, Haley WE. Predictors of six-month survival among patients with dementia: an evaluation of hospice Medicare guidelines. Am J Hosp Palliat Care 2003;20:105-13.

Decision making in dementia
* Hierarchy of decision making
* Competence v. capacity
* Special circumstances

Special circumstances
Case 1: Incapacitated pt with no proxy and unknown preferences
Case 2: Chronically mentally ill pts with no capacity
Case 3: Chronically mentally ill pts with fluctuating capacity

Intact decision making prior to death in the elderly
Alzheimer’s Disease
Diseases other than Alzheimer’s
Lentzer HR et al “ The quality of life in the year before death”. Am J Public Health 82: 1093-1098, 1992
Interface between palliative care and dementia

* Clarity of decision making
o Soft balls ( relatively speaking):
o Hard balls

The decisions themselves are never easy.
Advance care planning
Shades of Gray
Possible levels of care:
Heroic life prolonging measures
* CPR
* “Whopper no veggie*”
* Artificial nutrition
* Artificial hydration
* Antibiotics

What are the goals of care?

Tube feed or not tube feed?
That’s the question
* The facts:
Palliative care symptoms and cognitive impairment
Symptoms
Presentation of these symptoms is skewed
What does dying look like?

* Decline in functional status
* Lack of desire to eat or drink
* Withdrawn
* Sleep- wake state
* Mottling of limbs
* Jaw movement
* Death rattle
* Co-morbid symptoms
* Unpaid
* Overworked
* On-call 24/7
* Sleep deprived
* No social life
* Poor support system

Palliative care of advanced dementia A patient centered approach.ppt