Dr. Daphna Grossman

PALLIATIVE CARE CONSIDERATIONS IN ADVANCED DEMENTIAPALLIATIVE CARE CONFERENCEJUNE 6-8, 2014

DR. MICHAEL GORDON MD MSC FRCPCDR. DAPHNA GROSSMAN MD CCFP(EM) FCFP

OBJECTIVES

• To understand the role of palliative care in the care of the patient with dementia

• To explore approaches to behavioural challenges associated with dementia

• To explore difference between advanced care planning and goals of care and how it relates to the care of patients with dementia

• To explore the specific challenges related to food/drink VS. hydration/nutrition

Meet Mr. S

• Diagnosed with Alzheimer’s dementia 5 years ago

• Comorbidities– CAD– NIDDM– Hypertension– Dyslipidemia– Osteoarthritis

Meet Mr. S

• Dependent in all ADLs• Aggressive at home

– Hits– Yells at his wife– Refuses to be washed

• Can no longer converse coherently

Family is distressed

Question

When would you consider Mr. S. Palliative?

When he was diagnosed with AD?

When he is admitted to LTC?

When he developed difficulty swallowing?

When family no longer wanted active treatment?

Acute Care Palliative Care

D Y I N G

Model Of Palliative Care

•

Primary CareIntegrated

Palliative Care12 months

EOL1 - 3 months

WHO 2012

EAPC Position Statement on Palliative Care and Dementia

• Dementia can realistically be regarded as a terminal condition… recognizing its eventual terminal nature is the basis for anticipating future problems and an impetus to the provision of adequate palliative care.

• Improving quality of life, maintaining function and maximizing comfort, which are also goals of palliative care, can be considered appropriate in dementia throughout the disease trajectory, with the emphasis on particular goals changing over time.

Van Der Steen et al. Pall Med 2014

Early Involvement of Palliative Care

• Improves quality of life• Decreases symptoms of depression and

anxiety• Less aggressive interventions at end of life• Live longer

Temel et al. NEJM 2010Zimmerman et al Lancet 2014

Early Involvement of Palliative Care

Issues that must be explored…

• Approach to Mr. S’s behaviours• Trajectory of AD – what can be expected?• Trajectory of comorbidities – what can be

expected?• Decision making concerning inter-current

illnesses• Safety at home/ Alternatives to home• Support for family• Plans for future

Issues That Must Be Explored…

Behaviours

Son asks:

How aggressively can we treat the behaviours?

Gauthier et al., Int Psychogeriatrics 2010

BPSD

BPSD - Treatment

Environmental• Routine• Predictability• Calm

Psychosocial• Simulated presence• Re-direction/re-orientation• Montessori Method• Caregiver training

Pharmacological• Antipsychotics• Antidepressants• Cholinergic Inhibitors• Memantine• Anticonvulsants• ECT

Careijeira et al., Front Neurol 2012Gauthier et al., Int Psychogeriatrics 2010

“Complementary”• Physical therapy• Massage therapy• Aromatherapy• Light therapy• Pet therapy• Music therapy• Doll therapy

Mr. K’s BehavioursPC Approach

Decision on how to treat symptoms when they are refractory depends on:

1. Severity of symptoms2. Goals of care and Advanced Care Planning3. Burden of illness (degree of debilitation)

Mr. K’s BehavioursPC Approach

Decision on how to treat symptoms when they are refractory to standard treatment depends on:

1. Severity of symptoms2. Goals of care and Advanced Care Planning3. Burden of illness (degree of debilitation)

Behavioural Scales

• Cohen Mansfield Agitation Index/Inventory (CMAI)

• DOS (Dementia Observation System) • “ABC” Charting• ABID (Agitated Behaviour in Dementia Scale).

Behavioural Scales

Mr. S

Hitting

? Measured

Which Pain Tool Should I Use?

• Dolphus II (1997)• ADD (1999)• CNPI (2000)• PADE (2003)• PAINAD (2003)

• NOPPAIN (2004)• Abbey Pain Scale

(2004)• PACSLAC (2004)• MOBID (2007)• Faces

Common Pain Behaviours in CognitivelyImpaired Elder Persons

Facial expressions Slight frown, sad, frightened face, grimacing, wrinkled forehead, closed or tightened eyes any distorted expression, rapid blinking

Verbalizations, vocalizations Sighing, moaning, groaning grunting, chanting, calling out, noisy breathing, asking for help, verbally abusive

Body movements Rigid, tense body posture, guarding, fidgeting, increased pacing, rocking, restricted movement, gait or mobility changes

Changes in interpersonal interactions

Aggressive, combative, resisting care, decreased social interactions, socially inappropriate, disruptive, withdrawn

Changes in activity patterns or routines

Refusing food, appetite change, Increase in rest periods, sleep, rest pattern changes sudden cessation of common routines, increased wandering

Mental status changes Crying or tears, increased confusion irritability or distress

AGS Panel JAGS 2002

How do we quantify pain?

Pain Scale

Faces Scale

International Association For The Study Of Pain. 2001Bieri et al., Pain 1990

PAINADItems 0 1 2 Score

Breathing Normal Occasional laboured breathing. Short period of hyperventilation

Noisy labored breathing. Long period of hyperventilation

Negative Vocalization

None Occasional moan or groan. Low level speech with a negative or disapproving quality

Repeated troubled calling out. Loud moaning or groaning. Crying

Facial Expression

Smiling or inexpressive

Sad. Frightened. Frown

Facial grimacing

Body Language

Relaxed Tense. Distressed pacing. Fidgeting

Rigid. Fists clenched. Knees pulled up. Pulling or pushing away. Striking out.

Consolability No need to console

Distracted or reassured by voice or touch

Unable to console, distract or reassure

“Potential value of pain meds to decrease antipsychotics in nursing homes.”

Back to Mr. S

You feel that pain may be contributing to his behaviours.

He is already on maximum dose of Tylenol.

You are wondering about opioids.

Benefits Risks

Decreased Pain?

Opioids

Decreased Agitation?

Dr. Giulia Perri

Mr. S’s Pain Control

• Tylenol 1000mg tid

• Topical Voltaren

• Morphine 2.5mg2.5mg morphine = Codeine 30mg/T3

Mr. S

IS THIS GOOD ENOUGH?

Yelling

Mr. K’s BehavioursPC Approach

Decision on how to treat symptoms when they are refractory depends on:1. Severity of symptoms2. Goals of care and Advanced Care Planning3. Burden of illness (degree of debilitation)

Advanced Care Planning

Questions we ask:DNR – Do Not ResuscitateFeeding TubesTransfusionsAntibiotics

Advanced Care Planning

Advanced Care Planning

Individuals have difficulty predicting what they would want in future circumstances

Patients treatment preferences and values change with change of health

Discussion focuses on intensive therapies

Challenges of ACP

Prepare for “In The Moment Decisions” by ongoing discussions about goals of care in the clinical context

Sudore et al Ann Intern Med 2010

Goals Of Care6 Practical Comprehensive Goals:1. Be cured2. Live longer3. Improve/maintain function/ QOL/ independence4. Be comfortable5. Provide support for family or caregiver6. Achieve life goals

a. Preparation for deathb. Remain in homec. Address spiritual needsd. Strengthen relationshipse. Achieve personal goals

Kaldjian et al Am J Hosp and Pall Med 2009

Which goals are achievable?Does the patient understand?Does the family understand?

Goals of Care

Dementia ProgressionPrioritization Of Goals

Van Der Steen et al Palliat Med 2013

Mr. K’s BehavioursPC Approach

Decision on how to treat symptoms when they are refractory depends on:

1. Severity of symptoms2. Goals of care and Advanced Care Planning3. Burden of illness (degree of debilitation)

Palliative Performance Scale

Disease TrajectoryCancer

MMedical Care of the Dying 2006

PPS = 40-50%Prognosis < 3 monthsPPS = 40%Prognosis < 3 months

Trajectory of Malignant Illnesses

Trajectory of DiseaseDementia

Medical Care of the Dying 2006

Trajectory of Illness in Dementia

Can live for years with PPS = 40%

Prognosis with

PPS = 20%

Prognostic Indicators of 6-month Mortality in Advanced Dementia

Brown et al. P.Medicine 2012

Treatment with antipsychotics

• Benefits• Risks• Prognosis• Goals of Care• Religious and Cultural

Beliefs

TREATMENT OF AGITATION

Dr. Giulia Peri

Pharmacological Approaches

1. Antipsychotics• Haloperidol• Atypical Antipsychotics • Phenothiazine

(Methotrimeprazine)

2. Benzodiazepines• Lorazepam• Midazolam

Pharmacological Approach

EPS

Anticholinergic

Sedating

Increase risk of Cardiac event,stroke, death

Falls

Confusion

Benefits Risks

ComfortCare

Goals of Care

Dr. Giulia Perri

How aggressive should we be in treating agitation?

PPS 10%PPS 20%PPS 30%PPS 40%PPS 50%PPS 60%

Severity of Symptoms and Goals of Care

Actively DyingMostly in bedWalking

Treatment of Agitation

Sitting/In bed

Dr. Giulia Perri

Son asks:

Do we need to keep treating the aspiration pneumonias?

Inter-current Illness

Trajectory of DiseaseDementia

Medical Care of the Dying 2006

Treatment of Inter-current Illness

Inter-current illness

Mitchell et al. NEJM 2009

Advanced Dementia and Inter-current Illness

Dr. Giulia Perri

How aggressive should we be in treating agitation?

PPS 10%PPS 20%PPS 30%PPS 40%PPS 50%PPS 60%

Severity of Symptoms and Goals of Care

Actively DyingMostly in bedWalking

Treatment of Inter-current Illness

Sitting/In bed

Treatment of inter-current illness?

• Goals of Care• Chance of recovery• Current status• Religious and Cultural

Beliefs

TREATMENT OF INTER-CURRENT ILLNESSES

You don’t need to treat underlying illness to achieve symptom control!

You have the right to refuse or withdraw life prolonging treatment

Dr. Giulia Perri

• Dementia is seldom recognized as a terminal illness or as being at high risk for death.

• Pneumonia, Febrile Episodes, and Eating Problems are frequent complications in patients with advanced dementia, associated with high 6-month mortality rates.

• Advanced Dementia is associated with a life expectancy similar to that of metastatic breast cancer and stage IV heart failure.

Dementia and Palliative Care

Mitchell et al J Palliat Med 2004Sachs et al., J Gen Intern Med 2004

Mitchell et al., NEJM 2009

Dementia and Palliative Care

• Uncontrolled symptoms• Feeding problems• Weight loss• Caregiver stress• Increased frequency of ER visits• Advance care planning/Goals of care

Dementia and Palliative Care

Cultural importance of eating: Does a feeding tube address this dilemma?

• Food is a universal source of comfort, love, hospitality, connectivity and lastly nutrition

• All cultures world-wide place food at a very high level of importance in terms of their identity

• At the most basic level, food exemplifies a desire to express love, caring, nurturing and devotion

Context (1)

• Within the medical context, in almost all situations the provision of food is bound up with the total provision of care even when medical “cure” is no longer possible

• Modern medicine introduced the ability to provide some sort of “feeding” when the person was not able to eat in the “normal” way, usually as a stop-gap until the ability to eat returned

Context (2)

• Using tubes for feeding patients goes back at least 3500 years to ancient Greek and Egyptian civilizations.

• Papyrus evidence suggests that Egyptian physicians used reeds and animal bladders to rectally feed patients things like wine, milk, whey, broth and so on to treat a range of complaints.

Context (3)

• Rectal feeding would remain the artificial feeding method of choice for many thousands of years because: difficulties in accessing the upper GI tract without also killing the patient

• In 1790 a physician Dr. John Hunter (the KnifeMan) was doing oral-gastric feeding using a whale bone covered in eel skin attached to a bladder pump to feed his nutrient solutions. He is reported as using mixtures of jellies, beaten eggs, sugar, milk and wine

Context (4)

• ~1910, two things were notably happening at roughly the same time. Dr. Einhorn was experimenting with nasally-inserted feeding tubes going into the jejunum (what we would call now an NJ tube): past the stomach and into a part of the upper intestines

Context (5)

• In the 1930s doctors were starting to pioneer the use of hydrolysate-based formulas in NJ feeding for those whose stomachs were compromised in one way or another.

• Mixtures used casein hydrolysate; essentially skim milk treated and fortified with acid, pepsin, salt, bicarbonate soda, dextrose and various vitamins

Context (6)

• One of the big issues with percutaneous gastrostomies – was the problem of infection

• Until the 1940s there were no really effective antibiotics: a disincentive to do a gastrostomy when an NG tube, although a slightly horrible experience for the patient, could do the job

• With the advent of modern antibiotics: an explosion in the sorts of surgeries that would be attempted, and would eventually become commonplace—along with the safety of PEGs

Context (7)

• Patients taking their nutrition via tube do not really have a problem with how the solution tastes, and as more and more advances were made in materials for tubes, tube placement surgery and feeding formulas, the formulas derived from the NASA-led research became the standard for tube feeding nutrition

Context (8)

• Something else was going on in the 60's and 70's that related to tube feeding also – far fewer people were dying: a slow cultural change that had been gathering pace over the century

• We seemed to become a lot less comfortable with allowing death to happen if it was at all avoidable, regardless of circumstances, in much of Western civilization: a very large factor was technological

Context (9)

• The miracles of antibiotics, amazing new drugs, advanced diagnostic and surgical techniques all combined to allow us to save lives that we never before would have been able to save

Context (10)

• Since the last few decades of the 20thcentury, we've seen an explosion in the number of feeding tubes placed right across the world, most pronounced in countries like the USA

• Tube placements have continued to grow faster than the population, so it would be reasonable to think currently there might be half a million to a million people using feeding tubes in the USA alone

Context (11)

To go along with the boom in numbers of tube-fed patients, we now have commercially available enteral formulas in hundreds of different variations; many are very similar, just made by different manufacturers and to different calorie densitiesThere are others designed with specific diseases and patient needs in mind

Context (12)Context (12)

• With these technological advances in the ability to provide “nutrition” through one form of feeding tube or another with relative comfort and safety the questions ethical and human questions arises,

• “Should we do this, and if so for whom, and if so for how long, and what does it say about the idea of using food as a demonstration of love, nurturing and affection?”

Context (13)

• 86 year old female with a 6 years history of progressive dementia, and a previous stroke which left mildly aphasic and in need of as PSW for all of her ADLs

• But, was normally alert and able to cooperate in certain domains

• Able to eat if food cut into small pieces are soft texture

Case (1)

• While in Florida for her yearly winter there with her PSW who had been with her for years she choked while eating

• PSW tried to administer upper abdominal compression to now avail

• Paramedics eventually dislodged the bolus of food but she had by this time suffered brain damage

Case (1)2

• While in hospital, when it became clear that she was not going to recover, with the agreement of her son and daughter (joint SDMs) she had a gastrostomy tube inserted

• Eventually returned to Toronto and then transferred to Baycrest for CCC

• She was in minimally conscious state with a PEG in place

Case (1)3

• Within in a few days after arrival the son “discovered” an advance directive written 10 years previously. He and sister claim they were never made aware of it

• AD indicates that she would not want an “artificial” treatments to keep her alive and focus of care if she were not to recover should be “comfort”

• She never discussed with family

Case (1)4

• This discovery triggered a discussion with the family about what the staff felt their duty would be to respect her wishes.

• Family agreed to DNR order but other than that would not agree to curtail and other inter-current treatments (as for infection)

• Would not agree to stop using PEG

Case (1)5

• Son and daughter indicated that “they could not live with such a decision”

• Referral to Consent and Capacity Board CCB) which after thorough review including witnesses (lawyer who made out the AD) agreed with Baycrest

• Family appealed decision of CCB

Case (1)6

• Eventually referred to Ontario Superior Court of Justice

• Witnesses called on both sides• Ruling found “errors” in the decision by the CCB

(could not be certain that patient truly understood the implications of her AD)

• CCB ruling overturned• Patient continues with PEG, has had two infections

treated, has not awakened to any significant level

Case (1)7

• 88 year old male, admitted to palliative care unit for terminal disease care with a background of advanced dementia and metastatic pancreatic cancer with significant symptoms of pain, and abdominal discomfort

• Came from another PC unit in a facility less convenient for family to visit

Case (2)

• During first 24 hours after admission, minor changes made in medication as patient appeared to be uncomfortable and was agitated

• Cumulative dose of both analgesics and neuroleptics not significantly different from those received in previous facility, other slight change in neuroleptic

Case (2)

• On day three eldest daughter and dominant SDM (shared responsibility) complained bitterly to nursing director that “we are killing her father” claiming that “he has been asleep since he has been here”

• Met to discuss with family• “Prior to his admission he was fine”• “He was eating fine and that is how we want

him”

Case (2)3

• Appeared to overlook or deny records we received from previous setting including agreement to principles of palliative and “end of life” care

• Accused of us of wanting him to die “so we could have the bed and save money”

• Attending physician had only spoken to family over the phone an not in person. Claims she “explained” everything clinically to them and how she was titrating his medications

Case (2)4

• Decision had been made over the phone when contacted top administer Narcan®(naloxone) even though last dose of opiates was 8 hours previously

• All neuroleptics held• IV fluids provided• Long discussion with family vis a vis goals of

palliative care• They were furious and threatening

Case (2)5

• Patient gradually became more alert• Daughter was able to feed him• Appeared to be in discomfort• Daughter slept next to his bed over-night- next

morning claimed she could not sleep as he was very “restless”

• Agreed reluctantly to allow us to give “small” doses of neuroleptics but wanted to be called before each dose

Case (2)6

• All communications with family whether in person or on the phone (had a very loud voice) focused on whether he ate anything or not (she brought in food from home)

• He became more agitated and clearly expressed physical discomfort: could no longer swallow food without choking

• Many meetings: very reluctantly agreed to more opiates and neuroleptics

Case (2)7

• Died in comatose state with family present

• No carry through on threats to “report” the doctors, nurses and facility to the “authorities” and the media

Case (2)8

• 79 year old female transferred from acute care to Baycrest

• Massive stroke, 2 years after minor stroke with good recovery

• PEG inserted when clear patient would not recover ability to eat

• Minimal consciousness: could recognize family

Case (3)

• After three months in hospital with no improvement in any domain approached by son

• “We have to take out the tube; This is not what we had hoped for or what she would have wanted”

• Family meeting arranged

Case (3)2

• Son and daughter and senior nursing and SW staff and “ethicist”- primary care MD could not attend

• “We had hoped she would improve as she did after the previous stroke. We do not believe knowing her that she would have wanted to be like this”

• Staff agreed that the PEG feeding would be discontinued

Case (3)3

• When plan communicated to staff they were “shocked”

• “Why—she is no worse than she has been since admission—no pressure ulcers, no discomfort”

• “Isn’t this against the law or nursing regulations?”

• “Isn’t this equivalent of euthanasia?

Case (3)4

• Could not quiet turmoil despite explaining the Health Care Consent act and SDM’s duties and rights to act on

• Attending physician felt “uncomfortable” about writing the order “for personal and religious” reasons

• How to resolve?

Case (3)5

• Patient transferred to palliative care unit after all the information explained

• Patient treated in palliative manner with D/C of tube feedings and comfort measures provided

• Death in 10 days in complete comfort• Family forever grateful

Case (3)6

• Debriefing of staff revealed they felt that “it happened to fast” and that “they had not heard directly from the family”

• Felt that had they had enough time they would have accepted decision and been able to carry out their duties and commitment to this patient and family

Case (3)7

• End-of-life and palliative care must be prepared for before there is a crises

• Must be a deliberate discussion between affected person and SDMs

• SDMs must agree that they will be able to and be comfortable to carry out wishes from either verbal or written directions

Lessons learned (1)

• Discussions (the conversation) likely to require more than one focused meeting

• Best to be a process of discussion• If advance directive is written should be with

help of someone (i.e. lawyers) who is knowledgeable with concepts, concepts and language so there are no ambiguities should there be disagreement after the fact

Lessons learned (2)

• Choice of and communication with SDMs very important

• Choice may require a non-family third party to avoid family conflict and life-long guilt

• Specific issue of food and Artificial Nutrition and Hydration must be part of conversation

• Physicians can help by bringing up issue as part of normal clinical encounters and discussions

Lessons learned (3)

• Creative ways to deal with the importance of food within the culture and the comfort of the person should be sought from knowledgeable professionals

• Must always recognize the importance of food and drink in human existence and ANH is not really the same

Lessons learned (4)

• End-of-life and palliative care often have a component of focus on food and drink and Artificial Nutrition and Hydration

• Must not minimize their importance• Must provide honest and knowledgeable information

about all aspects of ANH and support families who will face the challenge and potential guilt of carrying out such decisions; even when they know it is the right decision

Conclusion

“To cure sometimes,To relieve often,

To comfort always”

Thank You