Role of Specialist Palliative Care Services in Patients Severely

Affected by MSDr Linda Wilson

Consultant in Palliative Care

Airedale

National Service Framework forLTC Quality Requirement 9

People in the later stages of long-term neurological conditions are to receive a comprehensive range of palliative care services when they need them to control symptoms, offer pain relief, and meet their needs for personal, social, psychological and spiritual support, in line with the principles of palliative care.

1. Do patients with advanced MS have specialist palliative care needs?

2. If so, what are they?

3. Can specialist palliative care services meet those needs?

4. If so, when should SPC become involved?

Do people with MS have palliative care needs?

• People with advanced MS and other long term conditions have unmet health and social needs in the last year of their livesAddington-Hall et al Pall Med 12(6)1998

• 3 year research project funded by MS Society, Kings College Hospital and Dept. of Palliative Care Policy, Kings College

32 people severely affected by MS

Kings Study

Several broad themes identified:• Significant symptom burden- Spasm, Pain,

Secretions, Bowel management, Dysphagia, Nausea

• Distress associated with Loss and change-need for psychosocial support

• Provision of services and care– Lack of continuity and coordination of care– Lack of information about services, aids and

adaptations, welfare benefits

• Need to address end of life issues-advance care planning

• Underpinning theme of ‘fighting for everything’

Symptom Burden in Advanced Disease

Symptom

Pain

Fatigue

Nausea

Constipation

Dyspnoea

MS2

68%

80%

26%

47%

26%

Heart disease1

Resp. Disease1

41-77% 34-77%

69-82% 68-80%

17-48% ?

38-42% 27-44%

60-88% 90-95%

1. Solano, Gomes, Higginson 2006; 2. Kings College London MS Pall. Care Project

Cancer1

35-96%

32-90%

6-68%

23-65%

10-70%

1. Do patients with advanced MS have specialist palliative care needs? Yes, but not well researched

2. If so, what are they? Symptom control, psychosocial care, advance care planning and end of life issues

3. Can specialist palliative care services meet those needs?

4. If yes, when should SPC become involved?

• Traditionally, relatively small numbers of people with chronic neurological conditions access specialist palliative care services

• Based on population figures, prevalence of MS in Bradford, Airedale and Craven is more than 600 individuals (?900)

• How many of these are severely affected?

• Need is potentially large but unknown at present

• In 2006 SPC saw 10 individuals with MS (1.6% of 600)

10 individuals

• 12 inpatient admissions

• 7 received community team support

• 2 attended weekly Day Therapy

Patients seen by SPC services in Bradford, Airedale and Craven in 2006

2224

10 11

5

1 1 1

12

0

5

10

15

20

25

30

MND Dementia MS CVA PD HD PMA Creutzfeldt-Jakobdisease

Unspecifieddisorders ofthe nervous

system

Challenges in MS

• Protracted disease and course is variable and can be difficult to predict

• Long term involvement- Some will benefit from ongoing SPC follow up but others may only have 1 off consultations/joint assessments or shorter periods of involvement

• ???Service overload• Linking with other services-when do we

get involved

When should specialist palliative care get involved?

‘The surprise question’

“Would you be surprised if this patient were to die in the next 6-12 months?”

-an intuitive question integrating co-morbidity, social and other factors.

Combined with…………..

Eligibility criteria

The patient has one or more of the following needs which are unmet:

– Uncontrolled or complicated symptoms.

– Specialised nursing/therapy requirements.

– Complex psychological/emotional issues.

– Complex social or family issues.

– Difficult decision making about future care.

Cure/Life-prolongingIntent

Palliative Care-physical,emotional,

social, spiritual

Bereavement

DEATH

PalliativeCare

DEATH

Evolving Model Of Palliative CareEvolving Model Of Palliative Care

Time

Cure/Life-prolongingIntent

Advanced planning

• Competency/Communication-MCA

• Further antibiotics

• PEG feeding tube

• Place of care

• CPR/Ventilation

• Advance statements and advance decisions

End of Life Care in MS

• 50% deaths related to complications of MS usually sepsis

• Others as general population-heart disease, tumours, etc. (high suicide rate)

• Symptoms at end of life common to most disease areas, the same principles as end of life care in other situations

End of life care in MS

NHS End of Life Initiative -government initiative to improve quality of end of life care

• Increasing focus on enabling people to die in their preferred place of care

• Promotes use of Gold Standards Framework, Liverpool care Pathway for the Dying to ensure best practice in all settings (home, care home, hospital, hospice)

1. Do patients with advanced MS have specialist palliative care needs? Yes, but not well researched

2. If so, what are they? Symptom control, psychosocial care, advance care planning and end of life issues

3. Can specialist palliative care services meet those needs? Yes but careful selection required, short term involvement and then withdrawal

4. If yes, when should SPC become involved? Surprise question and eligibility criteria

Case Study 1

• 36 year old lady, secondary progressive MS, lives with partner as main carer.

• 3 school age children fostered• Bed bound and not eating or drinking• High level of personal neglect and refusing help

of paid carers• Reluctant to engage with health professionals

except a social worker who she had a good relationship with

• Adamant wanted to stay at home

• Palliative care joint visit with social worker• Disclosed fear that if admitted to hospital would

not return home• Short term hospice admission negotiated for

symptom control and to assess competence• Found to be competent and developed

confidence that her wishes to be cared for at home would be respected

• Allowed paid carers to come in• Continued to dislike hospital but accepted

hospice admission to manage acute infective episodes

• Died during 3rd septic episode in hospice• Bereavement care for partner and children

Core Indicators Of Advanced Disease

• Recent, significant functional decline (loss of ADL’s)

• Dependence in 3 ADL’s or more• Multiple co-morbidities• Weight loss• Serum albumin < 25 g/l • Reduced performance status / Karnofsky score

(KPS) < 50% • Severe progression of disease in recent months• Recent increase in episodes of hospitalisation

Exacerbations

Deterioration

End of life

Core Indicators

Consider holistic assessment using palliative care approach having regard to Quality of life Comfort Patient Choice

Significant complex

symptoms eg pain

Communication difficulties egDysarthria+/-

fatigue

Cognitive difficulties

Swallowing difficulties/ poor

nutritional status

Breathlessness+/- aspiration

Medical complicationEg recurrent

infection

Ability to access

hospital based review

Difficulty verbalising choice

consider PEG feeding tube

Consider active management eg anti-biotic, and ventilation

Input from medical team,SLT, O.T. and dietician, physiotherapist or neuropsychiatrist as appropriate

Consider Referral to Specialist Palliative Care

Home assessment for

symptom control

Advance directive

End of life decisions and

future management

Symptom management &

future care planning

Need for end of life discussion

=/- preferred place of care

Refer to MDT

including hospitalpalliative

care

Refer to appropriate

acute service

Yes

Yes

Disease specific indicators

Suspect impaired ability to make decisions

Patient wants active management

No or not sure

No

No

Yes

Pathway for Referral of Person Severely Affected by MS To Specialist Palliative Care

020

40

60

80m

sm

nd pd ms

mnd pd m

sm

nd pd ms

mnd pd

hospice hospital home carehome

Place of Death 2001-2005

20052004200320022001

Place of Death MND, PD and MS 2001-2005, Bradford District

0

20

40

60

80

100

Hospice Hospital Care Home Home

MND

PD

MS

• Determining Capacity– Decision specific– Comprehend and retain information– Believe in it– Weigh up information, balance risks and

arrive at a choice