The Collaborative Mentoring NetworksPalliative and End-of-Life Care

Ontario MAID Provider Handbook

The Collaborative Mentoring Networks are supported by the Ontario Ministry of Health and Long-Term Care

TABLE OF CONTENTS

2. Ministry of Health and Long-Term Care forms for MAID requestsClinician Aids A, B, and C

3. MAID assessment formThis tool is included for your reference as a guide to a comprehensive MAID

consultation. The specific questions and concerns that arise during the course of a

MAID assessment will depend on the particulars of a patient’s situation, assessor’s

experience and comfort level with MAID, and the availability of background

information from other sources. In general, it is recommended that MAID

consultations should be thorough, but not onerous. Good clinical and interpersonal

judgment is required.

4. Sample referral for patients' other cliniciansThis letter may be used when the patient has another (non-MAID) clinician who

could potentially provide a confirmatory second assessment but is not familiar with

the process.

5. Instructions for completing Clinician Aid AThis may be given to patients or their representatives. (Shared with permission of

Assistance in Dying Oversight Committee, Trillium Health Partners)

6. Sample patient tracking sheet

7. Sample prescription for intravenous MAID kit

8. Sample consent form for MAIDWritten consent is not required after a patient has completed Clinician Aid A;

however, it is helpful to document the patient’s ability to consent immediately prior

to the intervention.

9. Sample procedure record for MAIDNote that the inclusion of bupivacaine in an IV MAID protocol is institution-specific.

Use of bupivacaine, or other agents that cause cardiac arrest, may be considered in

cases where a prolonged time to cardiac death is anticipated (e.g. younger patients,

those who are on continuous oxygen, etc.)

10. Document checklist for submission to the Coroner’s office

11. Clinical Frailty ScaleThis tool can be helpful to assess a patient’s progress along the trajectory towardsdeath when they do not have a single “terminal” illness.

12. Palliative Performance Scale - Victoria HospiceA widely-used assessment of functional abilities which measures how far along thetrajectory towards death a patient currently is.

Sample capacity assessment forms (for verbal | non-verbal

patients) Structured interview questions to elucidate the various

1.

13.

Full Pathway for MAID - Centre for Effective Practice Excerpted from the Medical Assistance in Dying Resource

dimensions of capacity. (Reproduced with permission of Assistance in Dying

Oversight Committee, Trillium Health Partners)

14. PHIPA-compliant release of information form – Ontario Ministry of

Health and Long-Term Care

15. Medical Certificate of Death – Ontario – Ontario Ministry of Consumer and

Business Services(Note that, contrary to what you may hear from funeral homes, there is no

requirement to use an “original” (i.e. double-sided) form, as long as the

printed form is signed appropriately.)

Compiled and edited by: Dr. Edward Weiss and Dr. James Downar

Due to the evolving nature of information and documents related to this topic, the OCFP makes no representation regarding the completeness, accuracy or timeliness of any information contained in this Handbook.

Version 1: 2018.07Revised with minor edits August 2018

Contributors: Gerald Ashe, Lilian Thorpe, Edward Weiss, Kim Wiebe

Thank you to all the organizations and individuals who created the tools and forms that appear in this Handbook.

This Handbook is a compilation of resources related to the provision of Medical Assistance in Dying in Ontario and is intended to help providers find more information and address matters related to processes and procedures.

1.

Full Pathway for MAID

Centre for Effective Practice

Excerpted from the MAID Resource. Reprinted with Permission from Centre for Effective Practice.

(Revised December 2017). Medical Assistance in Dying (MAID): Ontario. Toronto: Centre for Effective Practice.

1.

Revised December 2017

Ontario

thewellhealth.ca/maid

Patient meets ALL eligibility criteria

SECTION 2: Assessment of Patient Eligibility for MAID

SECTION 3: Provision of MAID

INTRODUCTION: Full Pathway for MAID

Communicate ineligibility to patient and inform the patient of their right to consult a different Clinician to obtain another eligibility assessment

Clinician conducts patient eligibility assessment for MAID (Clinician Aid B)Eligibility Criteria:1, 2, 3, 4

☐ Is at least 18 years of age ☐ Is capable of making decisions with respect to their health ☐Has a grievous and irremediable medical condition ☐Has made the request voluntarily (not due to external pressure) ☐Has provided informed consent to receive MAID, after having been apprised of alternate care options that are available to alleviate their suffering, including palliative care

☐ Is eligible for publicly funded health care services in CanadaPatient completes and signs formal written request (Clinical Aid A) (signed and dated by two independent witnesses)

Patient does not meet eligibility criteria

Clinician reaffirms that the patient is capable of making decisions related to their health, including the request and consent to proceed with MAID

Immediately before administering injection or prescription for MAID, the Clinician:

• Confirms the patient’s expressedconsent for MAID

• Provides the patient with the opportunity to withdraw the request

Clinician administers lethal injection or prescription for MAID

Certification of Death and Reporting:

Clinician contacts the Office of the Chief Coroner to report the death of a patient due to MAID. The Office of the Chief Coroner obtains information from the Clinician and family to ensure complete reporting and adequate understanding of the circumstances to determine if additional investigation steps are required. The Clinician will complete and sign the medical certificate of death (MCOD) in all cases except for the occasions when the coroner completes additional investigation

Reflection period completed:

A minimum of 10** days between the day the formal written request is signed and the day that the lethal medication is administered or prescribed

**possible exceptions

Patient meets ALL eligibility criteria

Clinician develops plan for the administration of MAID, in consultation with the patient, family/caregivers (with consent), and other members of the care team (including the pharmacist)

Designated facilities under the Trillium Gift of Life Network (TGLN) Act notify TGLN of patient’s request for MAID when patient’s death is imminent by reason of injury or disease

Independent Second Clinician conducts a separate assessment of patient eligibility for MAID (Clinician Aid C)

SECTION 1: Patient Inquiry

Clinician continues to provide ongoing care to the patient

Clinician discusses and explores the request with the patient and provides information on all available treatment and care options

Clinician chooses not to participate in the provision of MAID due to religious or conscientious objections

Patient chooses to explore alternate care options and chooses not to pursue MAID at this time

Patient chooses to proceed with MAID

Clinician:• Provides the patient with an overview of the MAID process• Patient has a grievous and irremediable medical condition • Patient informed of alternate care options such as palliative care• The request must be voluntary and not due to external pressure• Continues to provide ongoing care to the patient

Patient inquires about MAID

Clinician:

• Informs the patient that they are unable to provide MAID due toconscientious objections

• Refers the patient to another Clinician, institution, or agency (e.g., CCS) that is willing and able toprovide MAID

• Continues to provide ongoing care to the patient

Please see Section 4: Documentation Checklist for a list of documentation that should be included in the patient's medical record. These records should be on-hand and accessible to support an efficient and effective investigation by the Office of the Chief Coroner.

A 10 day reflection period begins:

2.

MAID Clinician

Aids –

Ministry of Health and Long-Term

Care

These forms are provided as samples only. Fillable forms are available on the MAID page of the MOHLTC

website.

Sample

Sample

Sample

Sample

Sample

Sample

Sample

Sample

Sample

3.

MAID Assessment

Form

This tool is intended as a guide to a comprehensive MAID

consultation. The specific questions and concerns that

arise during the course of a MAID assessment will

depend on the particulars of a patient’s situation,

assessor’s experience and comfort level with MAID, and

the availability of background information from other

sources. In general, it is recommended that MAID

consultations should be thorough, but not onerous. Good

clinical and interpersonal judgment is required.

ASSESSMENT FOR MEDICAL ASSISTANCE IN DYING

Date/time:

Assessor:

Name of Applicant:

Date of Birth: OHIP #:

Address:

Phone No: Alternate phone:

Contact person (if not patient):

Contact phone:

Assessment date/time:

Assessment location:

If this is the second assessment what was the date of the first assessment?

THOSE PRESENT

Patient’s background:

Birth and childhood

Education

Primary employment

Hobbies

Religion/spiritual affiliation

Finances

Medical Diagnoses and treatments to date:

Medications (current and past):

Trajectory of disease/illness progression:

Problem Contributing

to MAID

request? Comments

Pain

Nausea/vomiting

Dyspnea

Dysphagia

Difficulty eating

Difficulty speaking/communicating

Bleeding

Loss of bowel/bladder control

Lack of dignity/autonomy

Feelings of being a burden to others

Losing control over the dying process

Concerned about future suffering

Other:

Time alone with Patient

Any pressure from others?

Any significant financial concerns?

Any concerns about your family after your die?

Is there anything we need to know that you don’t want your family to know?

If you change your mind and don’t want to tell anyone - tell us, we’ll take responsibility. Changing your mind now doesn’t mean you can never have MAID.

Family/POA info

Name of POA (if available):

Are they aware of the application for MAID? YES [ ] NO [ ]

Do they support it? YES [ ] NO [ ]

Comments:

Spouse/partner:

Is he/she aware of the application for MAID? YES [ ] NO [ ]

Does he/she support it? YES [ ] NO [ ]

Comments:

Parents:

Are they aware of the application for MAID? YES [ ] NO [ ]

Do they support it? YES [ ] NO [ ]

Comments:

Children:

1.

2.

3.

4.

Are they aware of the application for MAID? YES [ ] NO [ ]

Do they support it? YES [ ] NO [ ]

Comments:

Siblings:

1.

2.

3.

4.

Are they aware of the application for MAID? YES [ ] NO [ ]

Do they support it? YES [ ] NO [ ]

Comments:

Primary care provider: Is he/she aware of the application for MAID? YES [ ] NO [ ]

Does he/she support it? YES [ ] NO [ ]

Comments:

Capacity to consent

Competence: Does the applicant…

Have the ability to understand the implications of their request for MAID?

YES [ ] NO [ ]

Have the ability to appreciate the foreseeable consequences of his/her decision?

YES [ ] NO [ ]

Is there evidence of coercion?

YES [ ] NO [ ]

Can untreated depression be ruled out as a primary cause of the request?

YES [ ] NO [ ]

Comments from patient (in their own words):

Physical exam

General appearance, nutritional state

Organ-specific findings

Vitals

Ease of peripheral IV access

Other exam findings

Mental status exam

LOC/Orientation

Cooperation

Speech quality

Thought process

Affect

Signs of psychosis

Insight/judgment

Comments

Eligibility

Criterion Y/N Why/Why not? Eligible for publicly funded health services

in Canada?

At least 18 years of age and capable of making decisions with respect to their

health?

Grievous and irremediable medical condition?

Serious and incurable illness, disease, or disability

Advanced state of irreversible decline in capability

Enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions

that they consider acceptable

Death is reasonably foreseeable?

Voluntary request for MAID that is not the result of external pressure?

Planning checklist

Has Clinician Aid A already been completed properly, after the patient was informed of their grievous and irremediable condition?

If not, patient given a copy of Clinician Aid A and advised about need for 2 independent witnesses. (May wish to advise them about availability of volunteers for witnessing through Dying with Dignity Canada.)

Is there any imminent loss of life or capacity to consent to MAID?

If not, patient advised about 10 day waiting period.

Earliest date that MAID is permitted:

Does patient have a preference for route of administration?

Clinician-administered (intravenous)

Self-administered (oral)

Is there a backup plan in case of interim loss of capacity? (e.g. palliative sedation if otherwise appropriate)

Does patient have a preference for where MAID is to take place?

Home

Hospital

Other

Has patient considered who will be present at time of MAID, and any particular rituals/ceremonies/music/etc?

Post-death arrangements (e.g. funeral/cremation) made?

Name/phone # of facility:

Patient aware of need to report case to coroner’s office immediately after death?

Is patient interested in organ/tissue donation? (Call TGLN)

Patient’s preference for privacy re: MAID – whom is it ok to tell?

Any need for bereavement counselling for loved ones? (Consider notifying about Bridge C-14)

Second assessment arranged?

Miscellaneous notes:

This tool was created by Edward Weiss, with contributions from Gerald Ashe, Lilian Thorpe, and Kim Wiebe. Version March 2018.

Information to relay about IV procedure

o Ideally need two IV’s in case one stops working part way through procedure.Theoretical risk of needing to start a new line in case existing access lostmidway through.

o All medications are paid for by OHIP.o Series of three medications: First makes you sleepy, second causes deep

coma, third stops your breathing after which your heart stops - usually takes10-15 minutes total.

o Very peaceful - Lips can turn blue, face ashen. Sometimes some deepbreathing with propofol, and muscular twitching following death.

4.

Sample Referral

Form for Patients'

Other Clinicians

Medical Assistance in Dying (MAID) Assessment Request

Patient demographics (or label)

Name:

Date of birth:

Address:

OHIP number and version code:

Best phone number:

Contact name (if not patient themself):

Alternate phone number:

Email address:

Referrer information (or stamp)

Name:

Address:

OHIP billing number:

Best phone number:

Fax:

Email address:

Role: O Family MD/NP

O Other: _________________

MOHLTC case #:

Patient's medical history

Primary diagnosis/reason for referral:

Other relevant comorbidities:

Prognosis/PPS (estimated):

Is your patient currently receiving palliative care?

Yes, under the care of _____________________________ (please attach any palliative care reports)

No, the patient (circle one) is not appropriate for palliative care declined referral other reason

How long have you known this patient for?

Has there been any recent change or deterioration in this patient's condition?

Please send any consultations, admission/discharge notes, medical imaging, etc. from the last 12 months.

Signature: Date of referral:

When did this patient first request MAID?

Prior to this request, did the patient ever discuss an interest or desire to seek MAID? If so,when and how often?

What treatment options for his/her condition has the patient tried?

What treatment options has the patient not yet tried, or has declined trying?

Yes No Not sureDo you think he/she is legally eligible for MAID? (please circle one)Please see page 3 for more information about eligibility criteria.

Would you feel comfortable confirming his/her eligibility in writing? Yes No Not sureIf yes, please complete page 4 and Clinician Aid C

If your patient is found to be eligible for MAID,how involved would you like to be in the process?

O Not involved at all, I do not want any part in the processO I would like regular updates on my patient's statusO I would like to participate in or observe my patient's assisted death

Is there any other information that we should be aware of when assessing this patient? (e.g. pressing psychosocial concerns, addictions, difficult family dynamics, concerns about capacity, religious affiliations)

rescind this request at any time. As their health care provider (either family physician, nurse practitioner or specialist) you are in an ideal position to to provide your own assessment of the eligibility criteria as they pertain to your patient. Please be aware that there is no obligation for you to provide an assessment of eligibility if you do not feel comfortable doing so.

Canadians are eligible to seek medical assistance in dying if they meet all the eligibility criteria established in the federal legislation of 2016 (previously called Bill C-14).

• They must be 18 years or older.• They must be eligible for health services funded by a federal, provincial, or territorial

government in Canada, or would be eligible if not for a routine waiting period. • They must be capable of consenting to MAID.

If there is any doubt of the patient's competence, the following questions may help:

• Do they understand their diagnosis?• Do they understand their prognosis?• Do they understand what is involved in an assisted death?• Do they understand what the alternatives to MAID are?

• Their request for MAID must be voluntary and not as a result of external pressure.

• They must be able to give consent for MAID that specifically indicates that they are aware ofother ways to treat their suffering, such as palliative care. They do not have to actuallyreceive palliative care or try any particular treatment before requesting MAID if this is not theirpreference.

• They must have a "grievous and irremediable condition," which is defined as:• they have a serious and incurable illness, disease or disability;• they are in an advanced state of irreversible decline in capability;• that illness, disease or disability or that state of decline causes them enduring physical

or psychological suffering that is intolerable to them and that cannot be relieved underconditions that they consider acceptable;

•their natural death has become reasonably foreseeable, taking into account all of theirmedical circumstances, without a prognosis necessarily having been made as to thespecific length of time that they have remaining.

With regard to a "reasonable foreseeable natural death," please be advised that this criterion does not require a specific terminal or fatal diagnosis, nor does it require a specific prognosis in terms of life expectancy. That is, death does not have to be expected in 6 months, 12 months, or any other arbitrary period of time. Rather, the idea is that the patient has reached a point where their natural death is likely in the "not too remote future." In the absence of a unifying threatening condition, this is a subjective criterion which must be individualized to each patient, but objective measures such as weight loss, frailty, recurrent hospitalizations, and functional decline can be used to gauge progression towards a reasonably foreseeable death. For more guidance, please consult the clinical practice guideline issued by the Canadian Association of MAID Assessors and Providers (www.camapcanada.ca/cpg1.pdf)

Understand the eligibility criteria for MAID

Your patient has made a request for medical assistance in dying. This does not mean that it will definitely occur, only that they are undergoing an assessment for eligibility at this time. They can

5.

A Guide to Completing

Clinician Aid A

A Guide to Completing Clinician Aid A (Patient Request for Medical Assistance In Dying)

Ensure to thoroughly read through the preamble within the outlined box at the beginning of the form before beginning to fill it out.

Special attention should be made to whom can act as an independent witness.

The use of this particular form is voluntary and you should never be coerced into completing it.

Section 1 – Patient Information: Your personal information, including your Ontario Health Insurance Plan (OHIP) card number. The version code is the two (2) letters that follow the 10-digit card number on the front of your OHIP card.

Section 2 – Request for Medical Assistance in Dying: Your declaration for a physician or nurse practitioner to help you die. All five (5) check boxes must be marked after they are read and understood. You must sign and date in the designated area.

Section 3 – Authorized Third Person: This area only needs to be completed if you are unable to sign and date the request on your own. Further details about who can act as an Authorized Third Person are outlined on the form. This area must be filled out in its entirety with the designated person’s information ONLY if you cannot fill out the form yourself.

Section 4 – Witnesses Present Upon Signing: This area must be signed and dated by two independent witnesses who were actually present to watch you sign and date Section 2.

Section 5 – Declaration of Witness: This area must be completed in its entirety by the same two independent witnesses from Section 4. Each witness must mark the five (5) check boxes following their personal information, after they have read and understood.

Each witness must also sign and date the form in the designated area.

It is important that each witness has signed and dated the form twice. Once each in Section 4, and again, once each in section 5.

It is important that the witnesses signing and dating the form, are actually present to watch you sign and date this request. The dates of all sections of the form should be the same.

Once the Clinician Aid A form has been completed, you should provide it to your doctor or nurse practitioner.

6.

Sample MAID

Patient Tracking

Form

MAID Patient Tracking Form

Patient name:

Date of birth:

Address 1:

Address 2:

Phone:

Health card # and version code:

Hospital number:

Referring MD/NP:

FP:

Contact person:

Date of request

Date of first assessment

First assessor

Date of second assessment

Second assessor

Underlying condition

Date of MAID

7.

Sample Prescription

for MAID

Prescription for Medical Assistance in Dying

Dr./NP:

CPSO/CNO#:

Address:

Cell #:

Fax #:

Email:

(please do not distribute contact information)

Name:

Address:

DOB:

Health card number:

Please provide as follows. If any of these are not available, please call me for alternatives.

Drug Strength Amount

Midazolam for injection 1mg/ml 20ml

Lidocaine without epinephrine

2% 10ml

Propofol for injection 10mg/ml 200ml

Rocuronium for injection 10mg/ml 40ml

18g needles, any length 10

Sodium chloride flushes (10ml)

0.9% 6

Plastic syringe, 60ml 4

Plastic syringe, 30ml 2

Plastic syringe, 10ml 4

Date:

Prescriber’s signature:

Patient demographics

8.

Sample Consent

Form for MAID

Consent for medical assistance in dying (MAID)

I, , request that I receive medical assistance in dying (MAID).

I am requesting MAID because I have an illness or disability that causes me ongoing suffering which cannot be relieved in

a way that I consider acceptable. I confirm that I knew about my illness or disability before requesting MAID, and that I

was given information about the nature of my condition before requesting MAID. I further confirm that my illness or

disability has caused my health and abilities to decline to the point where my death has been determined to be

reasonably foreseeable.

I am making this request of my own free will, and no one has forced or influenced me to make this decision. I have not

changed my mind about receiving MAID and I believe I am fully capable to make this decision for myself.

I have been offered alternatives to MAID, including palliative care and other forms of treatment, and I confirm that these

alternatives are not acceptable to me.

I understand that if I receive MAID, I will be given medication to cause my death on the day that the medications are

administered. I further understand the risks involved in the MAID process, which include but are not limited to discomfort

from the administration of the medications, the need to use more or different medication than is usually necessary, and

the possibility that the MAID process will not work and I will be left alive longer and possibly in worse condition than I

am now.

I understand that I may choose not to have MAID performed at any time until the administration of the medications meant

to cause my death. I understand that choosing to withdraw my request will not affect my medical care or treatment in any

negative way.

I request that MAID be performed in the following manner:

Oral administration of medications by myself or with the help of others. The medications to be used are

. The intravenous route will be

used as a backup in case the oral route does not work as planned.

Intravenous administration of medications by . The medications to be

used are .

All my questions regarding MAID have been answered to my satisfaction.

Signature of patient or (Printed name of 3rd party if patient Date of signature authorized 3rd party not signing)

Signature of witness Printed name of witness Date of signature

Signature of MD/NP Printed name and CPSO/CNO# Date of signature

9.

Sample Procedure Record for

MAID

MAID Procedure Administration Record

Patient name:

Patient DOB:

Date of procedure:

Location:

Attending physician/NP:

Other attendees

Preliminaries:

Informed consent signed and reconfirmed

Patient and attendees aware of sequence of events

Cell phones and landlines turned off

If patient has ICD/pacemaker, has been turned off

Intravenous line #1 gauge and placement

Intravenous line #2 gauge and placement

IV lines inserted by

MAID procedure:

Start time

Line flushed with 10ml NS

Midazolam mg = ml of 1mg/ml, push

Line flushed with 10ml NS

Lidocaine 40mg = 2ml of 2%, push over 30 seconds

Line flushed with 10ml NS

Propofol 1000mg = 100ml of 10mg/ml, push

Line flushed with 10ml NS

Coma confirmed (no response to verbal stimulus, slow and

weak pulse, slow and shallow breathing, no eyelash reflex)

Rocuronium 200mg = 20ml of 10mg/ml, push

Bupivacaine 0.5% 100 mL, push (optional)

Time of death

Coroner’s office (416-314-4100) informed

Physician/NP name: Date

College #:

Start time:

Stop time:

10.

Document Checklist for

Coroner’s Office

Document Checklist for Coroner’s Office

Patient demographics (including home address)

Clinician Aids A, B, and C (completed and signed)

Consultation notes from both assessors

Any background documentation that might be helpful to give context to the patient’s MAID request (if this information is available to you)

o Imaging results

o Consult notes from specialistso Hospital admission/discharge summarieso Palliative care consultations

o Patient’s own writings or letters about MAID

Consent form from day of MAID (if used)

MAID administration record

Optional: death certificate (coroner’s investigator will ask what you plan to enter as cause of death when you speak to them)

11.

Clinical Frailty Scale

Clinical Frailty Scale*

1 Very Fit – People who are robust, active, energetic and motivated.These people commonly exercise regularly. They are among the fittest for their age.

2 Well – People who have no active disease symptoms but are less fit than category 1. Often, they exercise or are very active occasionally, e.g. seasonally.

3 Managing Well – People whose medical problems are well controlled, but are not regularly active beyond routine walking.

4 Vulnerable – While not dependent on others for daily help, often symptoms limit activities. A common complaint is being “slowed up”, and/or being tired during the day.

5 Mildly Frail – These people often have more evident slowing, and need help in high order IADLs (finances, transportation, heavy housework, medica- tions). Typically, mild frailty progressively impairs shopping and walking outside alone, meal preparation and housework.

6 Moderately Frail – People need help with all outside activities and with keeping house. Inside, they often have problems with stairs and need help with bathing and might need minimal assistance (cuing, standby) with dressing.

7 Severely Frail – Completely dependent for personal care, from whatever cause (physical or cognitive). Even so, they seem stable and not at high risk of dying (within ~ 6 months).

8 Very Severely Frail – Completely dependent, approaching the end of life.Typically, they could not recover even from a minor illness.

9.Terminally Ill - Approaching the end of life.Thiscategory applies to people with a life expectancy <6 months, who are not otherwise evidently frail.

Scoring frailty in people with dementia

The degree of frailty corresponds to the degree of dementia.

Common symptoms in mild dementia include forgetting the

details of a recent event, though still remembering the event itself,

repeating the same question/story and social withdrawal.

In moderate dementia, recent memory is very impaired, even

though they seemingly can remember their past life events well.

They can do personal care with prompting.

In severe dementia, they cannot do personal care without help.

* 1. Canadian Study on Health & Aging, Revised 2008.

2. K. Rockwood et al. A global clinical measure of fitness and

frailty in elderly people. CMAJ 2005;173:489-495.

© 2007-2009.Version 1.2. All rights reserved. Geriatric Medicine

Research, Dalhousie University, Halifax, Canada. Permission granted

to copy for research and educational purposes only.

12.

Palliative Performance

Scale

Copyright Victoria Hospice Society, BC, Canada (2001)www.victoriahospice.org

Palliative Performance Scale (PPSv2)version 2

PPS

LevelAmbulation Activity & Evidence of Disease Self-Care Intake Conscious Level

100% Full Normal activity & workNo evidence of disease Full Normal Full

90% Full Normal activity & workSome evidence of disease Full Normal Full

80% Full Normal activity with EffortSome evidence of disease Full Normal or reduced Full

70% Reduced Unable Normal Job/WorkSignificant disease Full Normal or reduced Full

60% Reduced Unable hobby/house workSignificant disease Occasional assistance necessary Normal or reduced Full

or Confusion

50% Mainly Sit/Lie Unable to do any workExtensive disease Considerable assistance required Normal or reduced Full

or Confusion

40% Mainly in Bed Unable to do most activityExtensive disease Mainly assistance Normal or reduced Full or Drowsy

+/- Confusion

30% Totally Bed Bound Unable to do any activityExtensive disease Total Care Normal or reduced Full or Drowsy

+/- Confusion

20% Totally Bed Bound Unable to do any activityExtensive disease Total Care Minimal to

sipsFull or Drowsy+/- Confusion

10% Totally Bed Bound Unable to do any activityExtensive disease Total Care Mouth care

onlyDrowsy or Coma

+/- Confusion

0% Death - - - -

Instructions for Use of PPS (see also definition of terms)

1. PPS scores are determined by reading horizontally at each level to find a ‘best fit’ for the patient which is then assigned as the PPS% score.

2. Begin at the left column and read downwards until the appropriate ambulation level is reached, then read across to the next column and downwards again until the activity/evidence of disease islocated. These steps are repeated until all five columns are covered before assigning the actual PPS for that patient. In this way, ‘leftward’ columns (columns to the left of any specific column) are‘stronger’ determinants and generally take precedence over others.

Example 1: A patient who spends the majority of the day sitting or lying down due to fatigue from advanced disease and requires considerable assistance to walk even for short distancesbut who is otherwise fully conscious level with good intake would be scored at PPS 50%.

Example 2: A patient who has become paralyzed and quadriplegic requiring total care would be PPS 30%. Although this patient may be placed in a wheelchair (and perhaps seem initially tobe at 50%), the score is 30% because he or she would be otherwise totally bed bound due to the disease or complication if it were not for caregivers providing total care including lift/transfer.The patient may have normal intake and full conscious level.

Example 3: However, if the patient in example 2 was paraplegic and bed bound but still able to do some self-care such as feed themselves, then the PPS would be higher at 40 or 50%since he or she is not ‘total care.’

3. PPS scores are in 10% increments only. Sometimes, there are several columns easily placed at one level but one or two which seem better at a higher or lower level. One then needs to make a‘best fit’ decision. Choosing a ‘half-fit’ value of PPS 45%, for example, is not correct. The combination of clinical judgment and ‘leftward precedence’ is used to determine whether 40% or 50% isthe more accurate score for that patient.

4. PPS may be used for several purposes. First, it is an excellent communication tool for quickly describing a patient’s current functional level. Second, it may have value in criteria for workloadassessment or other measurements and comparisons. Finally, it appears to have prognostic value.

Copyright © 2001 Victoria Hospice Society

Definition of Terms for PPS

As noted below, some of the terms have similar meanings with the differences being more readily apparent as one reads horizon tally across each row to find an overall ‘best fit’ usingall five columns.

1. Ambulation

The items ‘mainly sit/lie,’ ‘mainly in bed,’ and ‘totally bed bound’ are clearly similar. The subtle differences are related to items in the self-care column. For example, ‘totally bed‘bound’ at PPS 30% is due to either profound weakness or paralysis such that the patient not only can’t get out of bed but is also unable to do any self-care. The difference between‘sit/lie’ and ‘bed’ is proportionate to the amount of time the patient is able to sit up vs need to lie down.

‘Reduced ambulation’ is located at the PPS 70% and PPS 60% level. By using the adjacent column, the reduction of ambulation is tied to inability to ca rry out their normal job, workoccupation or some hobbies or housework activities. The person is still able to walk and transfer on their own but at PPS 60% needs occasional assistance.

2. Activity & Extent of disease

‘Some,’ ‘significant,’ and ‘extensive’ disease refer to physical and investigative evidence which shows degrees of progression. For example in breast cancer, a local recurrencewould imply ‘some’ disease, one or two metastases in the lung or bone would imply ‘significant’ disease, whereas multiple metastases in lung, bone, liver, brain, hypercalcemia orother major complications would be ‘extensive’ disease. The extent may also refer to progression of disease despite active treatments. Using PPS in AIDS, ‘some’ may mean the shiftfrom HIV to AIDS, ‘significant’ implies progression in physical decline, new or difficult symptoms and laboratory findings with low counts. ‘Extensive’ refers to one or more seriouscomplications with or without continuation of active antiretrovirals, antibiotics, etc.

The above extent of disease is also judged in context with the ability to maintain one’s work and hobbies or activities. Decline in activity may mean the person still plays golf butreduces from playing 18 holes to 9 holes, or just a par 3, or to backyard putting. People who enjoy walking will gradually re duce the distance covered, although they may continuetrying, sometimes even close to death (eg. trying to walk the halls).

3. Self-Care

‘Occasional assistance’ means that most of the time patients are able to transfer out of bed, walk, wash, toilet and eat by their own means, but that on occasion (perhaps once dailyor a few times weekly) they require minor assistance.

‘Considerable assistance’ means that regularly every day the patient needs help, usually by one person, to do some of the activities noted above. For example, the person needshelp to get to the bathroom but is then able to brush his or her teeth or wash at least hands and face. Food will often need to be cut into edible sizes but the pa tient is then able to eatof his or her own accord.

‘Mainly assistance’ is a further extension of ‘considerable.’ Using the above example, the patient now needs help getting up but also needs assistance washing his face and shaving,but can usually eat with minimal or no help. This may fluctuate according to fatigue during the day.

‘Total care’ means that the patient is completely unable to eat without help, toilet or do any self-care. Depending on the clinical situation, the patient may or may not be able to chewand swallow food once prepared and fed to him or her.

4. Intake

Changes in intake are quite obvious with ‘normal intake’ referring to the person’s usual eating habits while healthy. ‘Reduced’ means any reduction from that and is highly variableaccording to the unique individual circumstances. ‘Minimal’ refers to very small amounts, usually pureed or liquid, which are well below nutritional sustenance.

5. Conscious Level

‘Full consciousness’ implies full alertness and orientation with good cognitive abilities in various domains of thinking, memory, etc. ‘Confusion’ is used to denote presence of eitherdelirium or dementia and is a reduced level of consciousness. It may be mild, moderate or severe with multiple possible etiologies. ‘Drowsiness’ implies either fatigue, drug sideeffects, delirium or closeness to death and is sometimes included in the term stupor. ‘Coma’ in this context is the absence of response to verbal or physical stimuli; some reflexes mayor may not remain. The depth of coma may fluctuate throughout a 24 hour period.

© Copyright Notice.The Palliative Performance Scale version 2 (PPSv2) tool is copyright to Victoria Hospice Society and replaces the first PPS published in 1996 [J Pall Care 9(4): 26-32]. It cannot be altered or used in any

way other than as intended and described here. Programs may use PPSv2 with appropriate recognition. Available in electronic PDF format by email request to edu.hospice@viha.caCorrespondence should be sent to the Director of Education & Research, Victoria Hospice Society, 1952 Bay Street, Victoria, BC, V8R 1J8, Canada

13.

Sample Capacity

Assessment Forms -

Verbal | Non-Verbal Patient

Assessment of Capacity for Assistance in Dying Guiding Questions1 (Verbal Patients)

As described in the Health Care Consent Act (1996), individuals are capable to consent to treatment if they have the ability to understand the information that is relevant to making a decision and the ability to appreciate the reasonably foreseeable consequences of a decision or lack of decision. This general framework will be relied upon for assessment of capacity to consent to assistance in dying. Prior to assessment of capacity, the patient will have been informed about his/her condition, the nature, benefits and risks of assisted death, as well as the alternatives.

This tool can be used as a guide for the physician or nurse practitioner’s discussion with the patient and their written documentation of the eligibility assessment. It does not need to be included in the patient’s health record.

1. Patient’s Ability To Understand

Test Questions Comments

Factual Knowledge

Patient is able to understand factual knowledge associated with his or her condition and assisted death.

Patient is able to understand purpose, benefits, risks, and alternatives of assisted death.

• Can you tell me about yourcurrent medical problems?

• How are your quality of lifeand daily activities beingimpacted?

• What do you know aboutassisted death?

• What will happen if youchoose assisted death?

• What are other alternatives?

Problem Solving Ability

Patient is able to understand at conceptual level and retain essential information long enough to reach an enduring decision.

Patient is able to problem- solve around personal issues related to assisted death.

• What are your thoughtsabout going forward withassisted death at this time?

• Have they changed overtime? If so, how?

• If a member of your familydisagreed with your decision,how would you manage this?

• Have you thought aboutgetting your affairs in order?

Overall Impression of Patient’s Ability to Understand

1 Adapted from Tool on Capacity and Consent: Ontario Edition (National Initiative for the Care of the Elderly & Advocacy Centre for

the Elderly, 2003)

THP Capacity Assessment Form for Verbal Patients – July 24, 2017 1

2. Patient’s Ability to Appreciate

Test Questions Comments

Realistic Appraisal of Outcome

Patient is able to appraise potential outcomes of a decision (i.e., certainty of death).

Patient is able to focus on reasoning process.

Patient’s thought processes are reality- based (not impacted by delusions or skewed by emotional states).

• Tell me what will happenif you go ahead withassisted death.

• How are you feeling aboutthis decision?

• Tell me how you decidedto request assisted death.Walk me through thesteps.

• How would you describeyour emotional state? Doyou feel you areburdening others?

Justification of Choice

Patient can describe how this decision is consistent with his or her values and beliefs.

Patient can articulate rational reasons for their choice.

• How does this decisionalign with your personalvalues and feelings?

• What’s most important toyou at this point in yourlife’s journey?

• Why do you want assisteddeath?

Overall Impression of Patient’s Ability to Appreciate

Other Comments:

THP Capacity Assessment Form for Verbal Patients – July 24, 2017 2

Assessment of Capacity for Assistance in Dying Guiding Questions (Non-Verbal Patients)1

As described in the Health Care Consent Act (1996), individuals are capable to consent to treatment if they have the ability to understand the information that is relevant to making a decision and the ability to appreciate the reasonably foreseeable consequences of a decision or lack of decision. This general framework will be relied upon for assessment of capacity to consent to assistance in dying. Prior to assessment of capacity, the patient will have been informed about his/her condition, the nature, benefits and risks of assisted death, as well as the alternatives.

This tool can be used as a guide for the physician or nurse practitioner’s discussion with the patient and their written documentation of the eligibility assessment. It does not need to be included in the patient’s health record.

1. Patient’s Ability To Understand

Test Questions Comments

Factual Knowledge

Patient is able to understand factual knowledge associated with his or her condition and assisted death.

Patient is able to understand purpose, benefits, risks, and alternatives of assisted death.

• Has your medical condition been getting worse over thepast few months?

• Are you able to eat some food by mouth?

• Do you want to have a feeding tube (or stop feedingtube, if patient has one in place)?

• Is your condition likely to lead to your death?

• Tell me which of the following terms best describesyour currently quality of life:Very Good Good Poor Very Poor

• Do you know that assistance in dying would result inyour death?

• Are you aware of other alternatives to assistance indying such as palliative care?

Problem Solving Ability

Patient is able to understand at conceptual level and retain essential information long enough to reach an enduring decision.

Patient is able to problem- solve around personal issues related to assisted death.

• Have you been thinking about AID for a while?

• Do you want to proceed with assistance in dying soon?

• Are your family members aware of your request?

• Are your family members supportive of your decision?

• Have you got your affairs in order (e.g., funeralarrangements?

Overall Impression of Patient’s Ability to Understand

1 Adapted from Tool on Capacity and Consent: Ontario Edition (National Initiative for the Care of the Elderly & Advocacy Centre for

the Elderly, 2003)

THP Capacity Assessment Form for Non-Verbal Patients – July 24, 2017 1

2. Patient’s Ability to Appreciate

Test Questions Comments

Realistic Appraisal of Outcome

Patient is able to appraise potential outcomes of a decision (i.e., certainty of death).

Patient is able to focus on reasoning process.

Patient’s thought processes are reality- based (not impacted by delusions or skewed by emotional states).

• Will you die if we proceed with assistance indying?

• Are you feeling comfortable with this decision?

• Have any of the following influenced yourdecision: Quality of life getting worse Fear of having trouble breathing Fear of choking Loss of independence Physical pain

• Do you feel that depression might be affectingyour decision?

Justification of Choice

Patient can describe how this decision is consistent with his or her values and beliefs.

Patient can articulate rational reasons for their choice.

• Is this decision consistent with your values andbeliefs?

• Do you have any concerns about proceeding?

Overall Impression of Patient’s Ability to Appreciate

Other Comments:

THP Capacity Assessment Form for Non-Verbal Patients – July 24, 2017 2

14.

Consent to Disclose Personal

Health Information

Consent to Disclose Personal Health Information Pursuant to the Personal Health Information Protection Act, 2004 (PHIPA)

I, , authorize (Print your name) (Print name of health information custodian)

to disclose

□ my personal health information consisting of:

(Describe the personal health information to be disclosed)

or

□ the personal health information of

(Name of person for whom you are the substitute decision-maker*)

consisting of:

(Describe the personal health information to be disclosed)

to (Print name and address of person requiring the information)

I understand the purpose for disclosing this personal health information to the person

noted above. I understand that I can refuse to sign this consent form.

My Name: Address:

Home Tel.: Work Tel.:

Signature: Date:

Witness Name: Address:

Home Tel.: Work Tel.:

Signature: Date:

*Please note: A substitute decision-maker is a person authorized under PHIPA to consent,

on behalf of an individual, to disclose personal health information about the individual.

15.

Medical Certificate of Death –

Ontario

This form is provided as a sample only.

Sample

Sample

Sources

Sources

2. MAID information – Ministry of Health and Long-Term Care

3. Assessment for MAID – Dr. Edward Weiss

4. Request for Second Assessment – Dr. Gerald Ashe

5. A Guide to Completing Clinician Aid A – Assistance in Dying Oversight

Committee, Trillium Health Partners

6. MAID Patient Tracking Form – Dr. Edward Weiss

7. MAID Prescription Kit – Dr. Edward Weiss

8. Consent Form for MAID – Dr. Edward Weiss

9. Procedure Record for MAID – Dr. Edward Weiss

10. Document Checklist for Coroner’s Office – Dr. Edward Weiss

11. Clinical Frailty Scale – Dalhousie University

12. Palliative Performance Scale – Victoria Hospice

13. Capacity Assessment Forms for Verbal Patients | Non-Verbal Patients –

Assistance in Dying Oversight Committee, Trillium Health Partners

14. Consent to Disclose Personal Health Information Pursuant to thePersonal Health Information Protection Act, 2004 (PHIPA) –Ontario Ministry of Health and Long-Term Care

15. Medical Certificate of Death (Ontario) – Ministry of Consumer andBusiness Services

1. Full MAID Pathway, from MAID Resource - Centre for Effective Practice