Living with a Life-Limiting Illness: Access to Care and Related Experiences, 2024

Screen questions

Introduction: The purpose of this study is to collect information to help understand the experiences and access to care of individuals with life-limiting illnesses and their unpaid caregivers.

Throughout the questionnaire we will be using the term "serious illness" and by that we are referring to life-limiting illnesses, diseases or conditions that cannot be cured and will ultimately shorten a person’s life.

If you are completing this questionnaire on behalf of someone with a serious illness, please answer the questions based on their experiences.

Do you or does someone you care about have a serious illness?

By “serious illness” we are referring to life-limiting illnesses, diseases or conditions that cannot be cured, get worse over time and will ultimately shorten a person’s life.

Include close family (e.g., children, partner, siblings, parents), friends or community members.

Select all that apply.

Yes, I have a serious illness
Yes, someone I care about has or had a serious illness
OR
No, neither I nor someone I care about has a serious illness

In the past 2 years, have you ever provided unpaid care or support for someone you care about who has a serious illness?

Unpaid care refers to any support or assistance you provide without receiving financial compensation. For example, helping with personal care, managing medications, providing emotional support, assisting with medical appointments or helping with household chores.

Include close family (e.g., children, partner, siblings, parents), friends or community members.

Select all that apply.

Yes, I am currently providing unpaid care
Yes, I have provided unpaid care in the last 2 years, but the person has since passed away
Yes, I have provided unpaid care in the last 2 years, but I no longer do
OR
No, I have not provided unpaid care for anyone in the last 2 years

Age

What is your age?

Age in years

Sex and gender

The following questions are about gender and sex at birth.

What is your gender?

[Gender refers to an individual’s personal and social identity as a man, a woman or a person who is not exclusively a man or a woman, for example, non-binary, agender, gender fluid, queer or Two-Spirit./Gender refers to an individual’s personal and social identity as a boy, a girl or a person who is not exclusively a boy or a girl, for example, non-binary, agender, gender fluid, queer or Two-Spirit./Gender refers to an individual’s personal and social identity as a man (or a boy), a woman (or a girl) or a person who is not exclusively a man (or a boy) or a woman (or a girl), for example, non-binary, agender, gender fluid, queer or Two-Spirit.]

Is it:

[Man/Boy/Man (or boy)]
[Woman/Girl/Woman (or girl)]
Or please specify
- Specify your gender

What was your sex at birth?

Sex at birth refers to the sex recorded on a person’s first birth certificate. It is typically observed based on a person’s reproductive system and other physical characteristics.

Male
Female

Please verify that all of the information is correct.

If all the information is correct, press the Next button.

To make changes, press the Previous button.

Your information

Gender: [Man/Boy/Man (or boy)/Woman/Girl/Woman (or girl)/Gender specified/Information not provided]

Sex at birth: [Male/Female/Information not provided]

Postal code

To determine which geographic region you live in, provide your postal code.

Postal code
Example: A9A 9A9

Dwelling type

What type of dwelling are you currently living in?

Private home or apartment
Retirement home or senior residence
a retirement home is a privately paid residency for seniors who can direct their own care but may need a bit more support with their daily living activities.
Long-term care facility or nursing home
long-term care facilities or nursing homes provide living accommodation for people who require on-site delivery of 24 hour, 7 days a week supervised care.
Unstable or temporary living situation
Homeless
Other
- Please specify type of dwelling

Assessment

Next, a few questions to understand your care needs.

What serious illness are you living with that impacts you the most?

Advanced cancer
Chronic liver disease
Chronic obstructive pulmonary disease (COPD) or other chronic lung condition
e.g., cystic fibrosis, pulmonary hypertension, tuberculosis
Dementia or Alzheimer's disease
Heart disease or failure
Human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS)
Kidney failure
Multiple organ failure
Neurological disease
e.g., amyotrophic lateral sclerosis (ALS), Lou Gehrig’s disease, multiple sclerosis, Parkinson’s disease, Huntington’s disease
Stroke or cerebrovascular disease
Weakened immune system or immunocompromised
Other
- Please specify the serious illness

Now some questions about primary healthcare. This is the type of healthcare usually delivered by family doctors or nurse practitioners who provide continuous care, are familiar with your medical history, and with whom you can book regular appointments. It is often the first point of entry to the Canadian health system.

Primary healthcare needs can include routine care such as check-ups and prescription refills as well as issues that need immediate care but are not emergencies, such as an infection, fever, headache, a sprained ankle, vomiting or an unexplained rash.

Patients sometimes have a care team which can include different healthcare professionals, as well as unpaid caregivers such as family, friends or community members.

Do you have a regular primary healthcare provider?

By this, we mean a health professional that you regularly consult with when you need care or advice for your health.

Select all that apply.

Yes, a family doctor
Yes, a nurse practitioner
Yes, a palliative care specialist
Yes, another specialist
Yes, another health professional
- Specify the other health professional
OR
No

Is someone from your care team regularly completing a needs assessment for you?

A needs assessment is an evaluation of your health status, risks and needs.

A care team includes the care you receive from healthcare professionals, as well as the support you get from unpaid helpers like family or friends.

Yes
No
Don’t know

Which of the following needs are being assessed by someone from your care team?

Select all that apply.

Physical
Psychological
Social
Include social support from family members or friends.
Cultural
Legal
Spiritual
End-of-life
Loss or grief
Other

Which conditions related to your serious illness limit your daily activities the most?

Select up to 3 answers.

Physical limitations
e.g., difficulty walking, using stairs, using your hands or fingers, problems with sight or hearing or doing other physical activities
Severe pain
Fatigue
Trouble breathing
Problems communicating
Lack of appetite or nausea
Cognitive limitations
e.g., difficulty learning, remembering or concentrating
Mental health conditions
e.g., anxiety, depression, substance abuse
Other
- Please specify the condition
OR
None of the above

Planning

Now, a few questions to understand how your wishes, values and beliefs are reflected within the management of your illness and care planning.

Have you engaged in conversations with someone from your care team about your wishes, values and beliefs regarding care for your serious illness?

For example, conversations may include discussions about where you would like to receive care, your treatment plan, pain management preferences, etc.

A care team may include healthcare professionals as well as unpaid helpers, like family or friends.

What topics did you discuss?

Select all that apply.

Setting of care
e.g., home, hospice, hospital, specialized care centre
Treatment plan
e.g., types of treatments, specific instructions for future care
Life-sustaining treatment options
e.g., resuscitation, ventilators, feeding tubes
Pain management preferences
Legal and financial matters
Spiritual considerations
Place of end-of-life care
e.g., home, hospice, hospital
Organ and tissue donation
Funeral or memorial preferences
Other
- Please specify topics discussed

Have you chosen someone to be your substitute decision-maker?

A substitute decision-maker is the person who will make decisions about your care and treatments on your behalf only if you are incapable of doing so on your own. Depending on where you live in Canada, this person can also be called a medical proxy, health representative or agent or power of attorney for personal care.

How confident are you that your substitute decision-maker has the information they need to make decisions on your behalf?

Very confident
Somewhat confident
Not very confident
Not confident at all

Have you had discussions with your healthcare providers about your goals of care?

Goals of care are your overall priorities and health expectations for care based on your personal values, wishes, beliefs and perception of quality of life.

How helpful were these discussions in understanding the treatment and care options available to you?

Very helpful
Somewhat helpful
Not very helpful
Not at all helpful

Did you experience any of the following challenges expressing your wishes to your healthcare providers?

Select all that apply.

Lack of knowledge about my condition
Not enough time during appointments
Language differences
Cultural differences
Fear of being judged or misunderstood
Uncertainty about treatment options
Lack of privacy during appointments
Difficulty understanding medical terms
Discomfort discussing certain topics
e.g., end-of-life care, mental health
Trust issues with healthcare team
Inadequate support for decision-making
Other
- Please specify challenges
OR
No, I have not experienced challenges
OR
Not applicable

Overall, to what extent do you feel your healthcare providers respect your care goals and wishes?

To a large extent
To a moderate extent
Not at all
Not applicable

Care team

The following questions ask about aspects of both your health and social care.

This includes the care you receive from healthcare professionals, both public and private, as well as the support you get from unpaid helpers like family or friends.

Who would you say is providing support and care to you for your serious illness?

Select all that apply.

Community volunteers
Family doctor
Family or friends
Nurses or nurse practitioner
Palliative care specialist
Personal support workers
e.g., home support worker or healthcare aide
Psychologists
Social workers
Specialists
Spiritual advisors
Other
- Please specify the person who provides support and care
OR
I don’t have a care provider

Who is most responsible for managing and coordinating your care and treatment?

This includes monitoring your treatment and care plans and facilitating communication between the various teams providing treatment and care.

Myself
Community volunteers
Family doctor
Family or friends
Nurses or nurse practitioner
Palliative care specialist
Personal support workers
Psychologists
Social workers
Specialists
Spiritual advisors
Other
- Please specify person most responsible
No one

Please indicate your level of agreement with the following statements.

My care team works well together
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
My care team helps improve my quality of life
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
My care team addresses my concerns
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
My healthcare providers collaborate well with me, my family and caregivers
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable

Management of pain and other symptoms

In this section we will ask about the pain and other symptom management that you receive related to your serious illness.

What symptoms are you experiencing that are the most concerning to you?

Select top three.

Agitation
Anxiety
Changes in breathing patterns
Constipation
Dehydration
Delirium
Depression
Diarrhea
Dyspnea (shortness of breath)
Fatigue
Trouble sleeping
Weakness
Confusion
Nausea
Pain
Poor appetite
Vomiting
Other
- Please specify the most concerning symptoms

Overall, how satisfied are you with the support you are receiving to manage your pain and other symptoms?

Very satisfied
Somewhat satisfied
Not very satisfied
Not satisfied at all

Which challenges have you encountered accessing necessary treatments or medications for pain and symptom management?

Select all that apply.

Cost and insurance issues
Availability
e.g., medications or treatments were not available or in stock
Distance
e.g., travelling distance to get to appointments or to access care services
Wait times, referral issues and appointment availability
My lack of knowledge
Communication and language barrier
Other
- Please specify challenges
OR
I have not experienced any challenges in access

To what extent have these challenges affected your access and choices for care?

Significantly affected
Moderately affected
Slightly affected
Not at all affected

Comprehensive supportive care

In addition to addressing physical needs, it is important that those with a serious illness receive timely support for their mental, emotional, social, cultural and spiritual needs.

Please indicate your level of agreement with the following statements.

Note: Press the help button (?) for additional information.

I feel comfortable sharing my psychological needs with my healthcare team
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
I often feel isolated from others
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
I often experience emotional distress, anxiety or deep sadness
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
My cultural background and beliefs are considered and respected in my care
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
I have access to spiritual support that aligns with my beliefs
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
I feel connected and supported by my community and social groups
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
I receive adequate support in coping with the challenges of my illness
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable

Timely access

In this section, we will ask about how long it takes you to access the care you need.

Please indicate your level of agreement with the following statements.

In general, I have timely access to the care services that I need
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
Care services are hard to access outside of regular hours (e.g., overnight, weekends or holidays)
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
Overall, the wait times between when I need and receive care are reasonable
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable

Which services do you have difficulty accessing at the time you need it?

Select all that apply.

Advance care planning
Care coordination
Grief support
Medical equipment or supplies
Mental health care
Nutritional guidance
Occupational therapy
Pain and symptom management
Personal care
e.g., bathing, dressing, feeding
Physiotherapy
Referral to specialists
Spiritual care
Respite care for caregivers
Other
- Please specify services
OR
I do not have difficulty accessing these services

What factors impact your ability to access care promptly?

Select all that apply.

Distance from care services
Lack of transportation or challenges with transportation
Availability of care providers or specialists
Availability of services in my preferred care setting
Lack of information about available care
Financial constraints
e.g., lack of insurance coverage
Communication barriers
e.g., language or cultural barriers
Difficulty navigating the healthcare system
Other
- Please specify factors

Have there been situations where the lack of timely support for your serious illness led to complications?

Did these complications with your serious illness lead to going to the emergency room (ER)?

In the last 12 months, how many times have you visited the emergency room (ER)?

Number of visits

Transitions in care setting

For the next set of questions we will ask about transitions in care. "Transitions in Care" refers to the process where an individual changes where they received care and who provides that care.

“Care Setting” refers to the location where the patient receives care. Examples of care settings include doctor’s office or clinic, home, hospital, hospice or long-term care facilities.

Have you experienced transitions in care settings?

What prompted these transitions?

Select all that apply.

Change in care needs
Cost issues
Proximity to family or caregivers
Access to specialized care
Other
- Please specify what prompted the transitions

Overall, how would you describe your experiences transitioning between care settings?

Very easy
Somewhat easy
Somewhat difficult
Very difficult

How well have your preferences for the setting of care been respected and accommodated?

Completely respected
Partially respected
Not respected at all

In your experience with transitioning between care settings, what challenges have you faced?

Select all that apply.

Coordination difficulties
e.g., delayed transfers, missing medical records, disrupted care continuity
Cost issues
Emotional and support challenges
e.g., stress, lack of support, difficulty adapting to new routines
Information and communication barriers
e.g., unclear information, missed services like counselling or medications
Physical and accessibility issues
e.g., transportation difficulties, inaccessible facilities, mobility challenges
Other
- Please specify challenges
OR
No challenges encountered

Services received at home

The following questions aim to understand your preferences and experiences in receiving care at home from professionals.

Home care services are professional support services that may assist with daily activities, medical care, mental health services, and more.

Overall, how satisfied are you with the care services you receive at home?

Very satisfied
Somewhat satisfied
Somewhat dissatisfied
Very dissatisfied
I do not receive any care services at home

Which of the following services received at home were you most satisfied with?

Select all that apply.

Pain management
Medical care and consultations
Personal care or home support
e.g., bathing, dressing, meal preparation, housekeeping
Other healthcare services
e.g., physiotherapy, occupational therapy, speech therapy, dietitian or nutritionist services
Social work
Medical equipment or supplies
e.g., wheelchair, help using oxygen equipment
Mental health services
Spiritual counselling
Respite services for caregiver
Grief counselling
OR
Not satisfied with any services I receive

Which of the following services received at home were you least satisfied with?

Select all that apply.

Pain management
Medical care and consultations
Personal care or home support
e.g., bathing, dressing, meal preparation, housekeeping
Other healthcare services
e.g., physiotherapy, occupational therapy, speech therapy, dietitian or nutritionist services
Social work
Medical equipment or supplies
e.g., wheelchair, homecare bed, oxygen equipment
Mental health services
Spiritual counselling
Respite services for caregiver
Grief counselling
OR
Satisfied with all services I receive

For which reasons were you dissatisfied with these services?

Select all that apply.

Services needed not available in my area
Poor quality
e.g., concerns about provider competence, reliability of services
Services did not address my needs
I could not access enough services to meet my needs
Long wait times to receive services
Cost was too high
There was a language barrier
Other
- Please specify reasons

Which of the following services were you unable to access at home?

Select all that apply.

Pain management
Medical care and consultations
Personal care or home support
e.g., bathing, dressing, meal preparation, housekeeping
Other healthcare services
e.g., physiotherapy, occupational therapy, speech therapy, dietitian or nutritionist services
Social work
Medical equipment or supplies
e.g., wheelchair, help using oxygen equipment
Mental health services
Spiritual counselling
Respite services for caregiver
Grief counselling
OR
I was able to access all services at home
OR
I did not try to access these services at home

For what reasons have you been unable to access these services at home?

Select all that apply.

Services needed not available in my area
Cost was too high
Lack of knowledge about available services or how to access them
Healthcare provider did not recommend the service for me
I am not eligible for funded home services
Scheduling issues
Spatial or access limitations of my home
Cultural or language barriers
e.g., services available do not accommodate my cultural or linguistic needs
Transportation issues
Quality concerns
Privacy concerns
Other
- Please specify reasons
OR
I did not want to access services at my home
OR
I did not need these services at my home

Preferred setting of end-of-life care

“End-of-life care” refers to care provided during the final stages of a serious illness.

“Setting of Care” in this context refers to the preferred location for end-of-life care, chosen by the patient, their family and healthcare professionals. This choice, influenced by various circumstances, aims to respect the patient’s wishes while providing necessary care. Examples of possible settings include home, hospice, hospital or long-term care facilities.

Have you had discussions with your healthcare providers about your preferred setting for end-of-life care?

Where is your preferred setting for end-of-life care?

Private home or apartment
Hospice
a special facility for people living with a serious illness who are nearing the end of life
Hospital
Seniors’ residence
Long-term care facility
Assisted living facility
I don’t have one
I don’t know
Other
- Please specify your preferred setting

What is most important to you when choosing your setting for end-of-life care?

Select top three.

Severity of medical condition
Pain and other symptom management
e.g., whether symptoms are under control
Availability of professional assistance
Availability of informal assistance
e.g., family, friends or community members
Access to urgent care or specialists
Finances
Personal wishes
Family considerations
Social connections
Spiritual or cultural considerations
Other

Overall, how much does access to care impact your choice of settings for end of life?

To a large degree
To some degree
To a small degree
Not at all

Caregiver support

This section is designed to understand the support your primary caregiver provided to you and the support they received in caring for you during your serious illness. If you have had more than one caregiver, please focus your responses on your experience with your primary caregiver.

Do you have an unpaid caregiver?

A caregiver is someone who provides unpaid care and support to you in a nonprofessional capacity, such as a family member or a friend. Types of support may include personal care, help with household activities, transportation, etc.

What is your primary caregiver’s relationship to you?

They are:

My spouse or common-law partner
My partner
My child
My grandchild
My parent
My sibling
My friend
My neighbour or community member
Other
- Please specify their relationship to you

What is their age?

Age in years

What is their gender?

Is it:

[Man/Boy/Man (or boy)]
[Woman/Girl/Woman (or girl)]
Or please specify
- Specify their gender

How long has your unpaid caregiver been supporting you?

Less than 6 months
6 months to less than a year
1 to 2 years
More than 2 years

Does your unpaid caregiver usually live with you?

What kinds of care does your unpaid caregiver provide for you?

Select all that apply.

Personal care
e.g., dressing, bathing, toileting
Medical care
e.g., help taking medicine, wound care
Managing care
e.g., making appointments, communicating with healthcare providers
Help with household activities
e.g., housework, home maintenance, outdoor work
Transportation
e.g., to appointments, for errands
Meal preparation, help with eating or having food delivered
Banking, paying bills or preparing taxes
Psychological, spiritual and emotional support
e.g., social visits, outings
Financial support to help pay for services
Other
- Please specify the kind of care they provide

Sources of information

The following questions aim to understand where you find information about your serious illness, resources and support.

Have any of your healthcare providers provided you with helpful sources of information (e.g., brochures, websites, support groups) for your serious illness and your care options?

Do you feel you have had sufficient opportunities to discuss and ask questions about your illness and care with your healthcare providers?

Have your caregivers and family members been provided with necessary information about your serious illness and care options?

Yes
No
I don’t know

Besides healthcare providers, where else did you seek information for the care and support you needed for your serious illness?

Select all that apply.

Local, provincial or national organizations
International organizations or resources
Internet search
e.g., Google
Health-specific websites or online forums
Social media, blogs or vlogs
Family, friends or community members
Traditional media
e.g., books, magazines, TV, radio
Educational institutions
Spiritual groups
Other
- Please specify sources of information
OR
I did not seek additional information

Cultural considerations

The following questions aim to understand your unique experiences, preferences and challenges in respect to your culture or spirituality while receiving care for your serious illness.

Overall, how comfortable are you discussing your cultural needs with your care providers?

Very comfortable
Somewhat comfortable
Not comfortable
Not comfortable at all
Not applicable

Overall, how would you describe the care providers' sensitivity to your cultural needs?

Cultural sensitivity is awareness and respect for another’s cultural beliefs, values and practices.

Very culturally sensitive
Somewhat culturally sensitive
Not very culturally sensitive
Not culturally sensitive at all
Not applicable

What types of cultural or spiritual misunderstandings or barriers have you encountered?

Select all that apply.

Difficulties related to language or communication
Differences in care approach due to cultural expectations or beliefs
Dietary or food-related
Misinterpretation of cultural or spiritual rituals or practices
Lack of accommodation or privacy to carry out cultural practices
Inappropriate remarks or behaviour
Other
- Please specify types of misunderstandings or barriers
OR
I have not encountered any types of cultural or spiritual misunderstandings

Palliative care

Palliative care is a relatively new field of medicine that takes a holistic approach to caring for those living with a serious illness.

It encompasses much of the care already asked about in this questionnaire, from pain and symptom management to emotional and spiritual needs and aims to consider the individual needs of each person living with a serious illness and their families and loved ones.

It can begin as soon as an illness is diagnosed, and it can be provided at the same time as someone is receiving treatments aimed at curing their illness.

Next are a few questions regarding palliative care.

Which of the following professionals have spoken with you about palliative care?

Note: Press the help button (?) for additional information.

Select all that apply.

Family doctor or nurse practitioner
Palliative care specialist
Other medical specialist
Social worker
Psychologist
Patient advocate
Other
- Please specify the professional
OR
No one has spoken to me about palliative care

Considering the definition provided, to what degree would you say you have received a palliative approach to your care?

A palliative approach is a specialized form of medical care for people with serious illnesses. It focuses on providing relief from symptoms and concerns, with the goal of improving quality of life for both the person with a serious illness and their family and caregivers. It is a holistic approach that addresses physical, emotional, social and spiritual needs and can be provided alongside treatment for the serious illness.

To a large degree
To some degree
To a small degree
Not at all

Please indicate your level of agreement with the following statements.

I began receiving palliative care early in the progression of my disease
- Strongly agree
- Agree
- Disagree
- Strongly disagree
The people I am close to have received support to help them cope with my illness
- Strongly agree
- Agree
- Disagree
- Strongly disagree
My care is coordinated across medical, social and psychological needs
- Strongly agree
- Agree
- Disagree
- Strongly disagree
The care I received for my serious illness has improved my mental health
- Strongly agree
- Agree
- Disagree
- Strongly disagree
I am supported by a team who are focused on my well-being
- Strongly agree
- Agree
- Disagree
- Strongly disagree

Palliative care aims to improve the quality of life for those living with a serious illness, their unpaid caregivers and family members by providing holistic care focused on individual needs and wishes.

Quality of life encompasses many aspects of life that contribute to well-being, including physical and mental health, personal beliefs, social relationships and other factors such as where we live.

With this in mind, please answer the following question:

To what extent has the care you have received for your serious illness affected your overall quality of life?

Improved significantly
Improved somewhat
No change
Declined somewhat
Declined significantly

Main activity

During the past 12 months, what was your main activity?

If the main activity was “sickness” or “short-term illness”, indicate the usual main activity.

Was it:

Working at a paid job or business
Vacation from paid work
Looking for paid work
Going to school, including vacation from school
Caring for children
Household work
Retired
Maternity, paternity or parental leave
Long term illness
Volunteering
Care-giving other than for children
Other

Education

What is the highest certificate, diploma or degree that you have completed?

Less than high school diploma or its equivalent
High school diploma or a high school equivalency certificate
Trades certificate or diploma
College, CEGEP or other non-university certificate or diploma (other than trades certificates or diplomas)
University certificate or diploma below the bachelor’s level
Bachelor’s degree
e.g., B.A., B.A. (Hons), B.Sc., B.Ed., LL.B.
University certificate, diploma or degree above the bachelor’s level

Sexual orientation

This question collects information on sexual orientation to inform health programs that promote equitable access and treatment for individuals living with a serious illness in Canada.

What is your sexual orientation?

Sexual orientation refers to how a person describes their sexuality.

Heterosexual (i.e., straight)
Lesbian or gay
Bisexual or pansexual
Or please specify
- Specify your sexual orientation:

Martial status

What is your marital status?

Is it:

Married
For Quebec residents only, select the "Married" category if your marital status is "civil union".
Living common law
Two people who live together as a couple but who are not legally married to each other.
Never married (Not living common law)
Separated (Not living common law)
Divorced (Not living common law)
Widowed (Not living common law)

Indigenous identity

Are you First Nations, Métis or Inuk (Inuit)?

First Nations (North American Indian) includes Status and Non-Status Indians.

If "Yes", select the responses that best describes this person now.

No, not First Nations, Métis or Inuk (Inuit)
OR
Yes, First Nations (North American Indian)
Yes, Métis
Yes, Inuk (Inuit)

Sociodemographic characteristics

The following question collects information in accordance with the Employment Equity Act and its Regulations and Guidelines to support programs that promote equal opportunity for everyone to share in the social, cultural, and economic life of Canada.

Select all that apply.

Are you:

White
South Asian
e.g., East Indian, Pakistani, Sri Lankan
Chinese
Black
Filipino
Arab
Latin American
Southeast Asian
e.g., Vietnamese, Cambodian, Laotian, Thai
West Asian
e.g., Iranian, Afghan
Korean
Japanese
Other
- Specify other group

Place of birth, immigration and citizenship

Where were you born?

Born in Canada
Born outside Canada

Are you a Canadian citizen?

Yes, a Canadian citizen by birth
Yes, a Canadian citizen by naturalization (Canadian citizen by naturalization refers to an immigrant who was granted citizenship of Canada under the Citizenship Act.)
No, not a Canadian citizen

Are you a landed immigrant or permanent resident?

A landed immigrant or permanent resident is a person who has been granted the right to live in Canada permanently by immigration authorities.

In what year did you first become a landed immigrant or a permanent resident?

If exact year is not known, enter best estimate.

Year of immigration

Language

Can you speak English or French well enough to conduct a conversation?

English only
French only
Both English and French
Neither English nor French

Total income

Now a question about total household income.

What is your best estimate of your total household income received by all household members, from all sources, before taxes and deductions, during the year ending December 31, 2023?

Income can come from various sources such as from work, investments, pensions, or government. Examples include Employment Insurance, social assistance, child benefits and other income such as child support, spousal support (alimony) and rental income.

Capital gains should not be included in the household income.

Rounded to the nearest CAN$

What is your best estimate of your total household income received by all household members, from all sources, before taxes and deductions, during the year ending December 31, 2023?

Less than $20,000
$20,000 to less than $40,000
$40,000 to less than $60,000
$60,000 to less than $80,000
$80,000 to less than $100,000
$100,000 to less than $150,000
$150,000 and over

Open-ended question

Do you have any further concerns about your care regarding your serious illness now or in the future, that have not been covered by this questionnaire? If yes, please let us know what they are below.

Enter your comments

Caregiver age

What is your age?

Age in years

Caregiver sex and gender

The following questions are about gender and sex at birth.

What is your gender?

Is it:

[Man/Boy/Man (or boy)]
[Woman/Girl/Woman (or girl)]
Or please specify
- Specify your gender

What was your sex at birth?

Sex at birth refers to the sex recorded on a person’s first birth certificate. It is typically observed based on a person’s reproductive system and other physical characteristics.

Male
Female

Please verify that all of the information is correct.

If all the information is correct, press the Next button.

To make changes, press the Previous button.

Your information

Gender: [Man/Boy/Man (or boy)/Woman/Girl/Woman (or girl)/Gender specified/Information not provided]

Sex at birth: [Male/Female/Information not provided]

Information of the person living with a serious illness

We will now ask you some questions regarding the person you are currently providing unpaid care for, or the last person for whom you have provided unpaid care in relation to a serious illness. If you are currently providing unpaid care for more than one person, please consider the person you usually provide the most hours of unpaid care for.

To facilitate the flow of the questionnaire, questions regarding the person being cared for will be asked using the past tense.

In order to personalize the survey, could you please provide the first name of the person you cared for?

Note: If you prefer not to provide the person's real first name, you can use a pseudonym or a number, as the first name is only used as a reference for the questions that follow.

First name

What was your relationship with [Patient Name]?

I was:

Their spouse or common-law partner
Their partner
Their child
Their grandchild
Their parent
Their sibling
Their friend
Their neighbour or community member
Other
- Please specify your relationship with [Patient Name]

Age of the person living with a serious illness

What was [Patient Name]'s age?

Age in years

Gender of the person living with a serious illness

What was [Patient Name]'s gender?

Was it:

[Man/Boy/Man (or boy)]
[Woman/Girl/Woman (or girl)]
Or please specify
- Specify [Patient Name]'s gender

What was [Patient Name]'s sex at birth?

Sex at birth refers to the sex recorded on a person’s first birth certificate. It is typically observed based on a person’s reproductive system and other physical characteristics.

Male
Female

Please verify that all of the information is correct.

If all the information is correct, press the Next button.

To make changes, press the Previous button.

[Patient Name]'s information

Gender: [Man/Boy/Man (or boy)/Woman/Girl/Woman (or girl)/Gender specified/Information not provided]

Sex at birth: [Male/Female/Information not provided]

Postal code of the person living with a serious illness

To determine which geographic region [Patient Name] lived in, provide their postal code.

Postal code
Example: A9A 9A9

Dwelling type

What type of dwelling was [Patient Name] living in?

Private home or apartment
Retirement home or senior residence
a retirement home is a privately paid residency for seniors who can direct their own care but may need a bit more support with their daily living activities
Long-term care facility or nursing home
long-term care facilities or nursing homes provide living accommodation for people who require on-site delivery of 24 hour, 7 days a week supervised care
Unstable or temporary living situation
Homeless
Other
- Please specify type of dwelling

Assessment

Next, a few questions to understand the care needs of [Patient Name].

What serious illness was [Patient Name] living with that impacted them the most?

Advanced cancer
Chronic liver disease
Chronic obstructive pulmonary disease (COPD) or other chronic lung condition
e.g., cystic fibrosis, pulmonary hypertension, tuberculosis
Dementia or Alzheimer’s disease
Heart disease or failure
Human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS)
Kidney failure
Multiple organ failure
Neurological disease
e.g., amyotrophic lateral sclerosis (ALS), Lou Gehrig’s disease, multiple sclerosis, Parkinson’s disease, Huntington’s disease
Stroke or cerebrovascular disease
Weakened immune system or immunocompromised
Other
- Please specify the serious illness

Patients sometimes have a care team which can include different healthcare professionals, as well as unpaid caregivers such as family, friends or community members.

Did [Patient Name] have a regular primary healthcare provider?

By this, we mean a health professional they regularly consulted with when they needed care or advice for their health.

Select all that apply.

Yes, a family doctor
Yes, a nurse practitioner
Yes, a palliative care specialist
Yes, another specialist
Yes, another health professional
- Specify the other health professional
OR
No

Was someone from [Patient Name]'s care team regularly completing a needs assessment for them?

A needs assessment is an evaluation of your health status, risks and needs.

A care team includes the care you receive from healthcare professionals, as well as the support you get from unpaid helpers like family or friends.

Yes
No
Don’t know

Which of the following needs were being assessed by someone from [Patient Name]s care team?

Select all that apply.

Physical
Psychological
Social
Include social support from family members or friends.
Cultural
Legal
Spiritual
End-of-life
Loss or grief
Other

Which conditions related to [Patient Name]'s serious illness limited their daily activities the most?

Select up to 3 answers.

Physical limitations
e.g., difficulty walking, using stairs, using their hands or fingers, problems with sight or hearing or doing other physical activities
Severe pain
Fatigue
Trouble breathing
Problems communicating
Lack of appetite or nausea
Cognitive limitations
e.g., difficulty learning, remembering or concentrating
Mental health conditions
e.g., anxiety, depression, substance abuse
Other
- Please specify the condition
OR
None of the above

Planning

Now, a few questions to understand how [Patient Name]'s wishes, values and beliefs were reflected within the management of their illness and care planning.

Did [Patient Name] engage in conversations with someone from their care team about their wishes, values and beliefs regarding care for their serious illness?

For example, conversations may have included discussions about where they liked to receive care, their treatment plan, pain management preferences, etc.

A care team may include healthcare professionals as well as unpaid helpers, like family or friends.

Yes
No
Don’t know

What topics were discussed?

Select all that apply.

Setting of care
e.g., home, hospice, hospital, specialized care centre
Treatment plan
e.g., types of treatments, specific instructions for future care
Life-sustaining treatment options
e.g., resuscitation, ventilators, feeding tubes
Pain management preferences
Legal and financial matters
Spiritual considerations
Place of end-of-life care
e.g., home, hospice, hospital
Organ and tissue donation
Funeral or memorial preferences
Other
- Please specify topics discussed

Did [Patient Name] select a substitute decision-maker?

A substitute decision-maker is the person who makes decisions about care and treatments on behalf of a person who is seriously ill, only if they are incapable of doing so on their own. Depending on where you live in Canada, this person can also be called a medical proxy, health representative or agent or power of attorney for personal care.

Yes, I was the substitute decision-maker
Yes, myself and someone else were the substitute decision-makers
Yes, they had a different substitute decision-maker
No
I don’t know

How confident are you that you had the information you needed to make decisions on [Patient Name]'s behalf?

Very confident
Somewhat confident
Not very confident
Not confident at all

Did [Patient Name] have discussions with their healthcare providers about their goals of care?

Goals of care are your patients' priorities and health expectations for care based on their personal values, wishes, beliefs and perception of quality of life.

How helpful were these discussions in understanding the treatment and care options available to [Patient Name]?

Very helpful
Somewhat helpful
Not very helpful
Not at all helpful

Did [Patient Name] experience any challenges expressing their wishes to their healthcare providers?

Select all that apply.

Their lack of knowledge about their condition
Not enough time during appointments
Language differences
Cultural differences
Fear of being judged or misunderstood
Uncertainty about treatment options
Lack of privacy during appointments
Difficulty understanding medical terms
Discomfort discussing certain topics
e.g., end-of-life care, mental health
Trust issues with healthcare team
Inadequate support for decision-making
Other
- Please specify challenges
OR
No, they did not experience challenges
OR
Not applicable

Overall, did you feel [Patient Name]'s healthcare providers respected their care goals and wishes?

Yes, to a large extent
Yes, to a moderate extent
No, not at all
Not applicable

Care team

The following questions ask about aspects of both [Patient Name]'s health and social care.

This includes the care you receive from healthcare professionals, both public and private, as well as the support you get from unpaid helpers like family or friends.

Besides you, who would you say provided support and care to [Patient Name] for their serious illness?

Select all that apply.

Community volunteers
Family doctor
Family or friends
Nurses or nurse practitioner
Palliative care specialist
Personal support workers
e.g., home support worker or healthcare aide
Psychologists
Social workers
Specialists
Spiritual advisors
Other
- Please specify the person who provided support and care
OR
Only myself

Who was most responsible for managing and coordinating [Patient Name]'s care and treatment?

This includes monitoring their treatment and care plans and facilitating communication between the various teams providing treatment and care.

[Patient Name]
Myself
Community volunteers
Family doctor
Family or friends
Nurses or nurse practitioner
Palliative care specialist
Personal support workers
Psychologists
Social workers
Specialists
Spiritual advisors
Other
- Please specify person most responsible
No one

Please indicate your level of agreement with the following statements.

[Patient Name]'s care team worked well together
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
[Patient Name]'s care team helped improve their quality of life
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
[Patient Name]'s care team addressed their concerns
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
Healthcare providers collaborated well with [Patient Name], their family and their caregivers
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable

Management of pain and other symptoms

In this section we will ask about the pain and other symptom management that [Patient Name] has received related to their serious illness.

What were the most concerning symptoms for [Patient Name]?

Select top three.

Agitation
Anxiety
Changes in breathing patterns
Constipation
Dehydration
Delirium
Depression
Diarrhea
Dyspnea (shortness of breath)
Fatigue
Trouble sleeping
Weakness
Confusion
Nausea
Pain
Poor appetite
Vomiting
Other
- Please specify the most concerning symptoms

Overall, how satisfied was [Patient Name] with the support they received to manage their pain and other symptoms?

Very satisfied
Somewhat satisfied
Not very satisfied
Not satisfied at all
Not applicable

From your experience, did [Patient Name] face any challenges in accessing necessary treatments or medications for pain and symptom management?

Select all that apply.

Cost and insurance issues
Availability
e.g., medications or treatments were not available or in stock
Distance
e.g., travelling distance to get to appointments or to access care services
Wait times, referral issues, and appointment availability
Lack of knowledge
Communication and language barrier
Other
- Please specify challenges
OR
[Patient Name] did not experience any challenges in access

To what extent have these challenges affected [Patient Name]’s access and choices for care?

Significantly affected
Moderately affected
Slightly affected
Not at all affected

Comprehensive supportive care

In addition to addressing physical needs, it is important that those with a serious illness receive timely support for their mental, emotional, social, cultural and spiritual needs.

Please indicate your level of agreement with the following statements.

Note: Press the help button (?) for additional information.

[Patient Name] felt comfortable sharing their psychological needs with their healthcare team
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
[Patient Name] often felt isolated from others
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
[Patient Name] often experienced emotional distress, anxiety, or deep sadness
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
[Patient Name]’s cultural background and beliefs were considered and respected in their care
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
[Patient Name] had access to spiritual support that aligned with their beliefs
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
[Patient Name] felt connected and supported by their community and social groups
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
[Patient Name] received adequate support in coping with the challenges of their illness
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable

Timely access

In this section, we will ask about how long it took [Patient Name] to access the care they needed.

Please indicate your level of agreement with the following statements.

In general, [Patient Name] had timely access to the care services they needed
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
Care services were hard to access outside of regular hours (e.g., overnight, weekends or holidays)
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable
Overall, the wait times between when [Patient Name] needed and received care were reasonable
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Not applicable

Which services has [Patient Name] had difficulty accessing at the time they needed it?

Select all that apply.

Advance care planning
Care coordination
Grief support
Medical equipment or supplies
Mental health care
Nutritional guidance
Occupational therapy
Pain and symptom management
Personal care
e.g., bathing, dressing, feeding
Physiotherapy
Referral to specialists
Spiritual care
Respite care for caregivers
Other
- Please specify services
OR
[Patient Name] did not have difficulty accessing these services

What factors impacted [Patient Name]’s ability to access care promptly?

Select all that apply.

Distance from care services
Lack of transportation or challenges with transportation
Availability of care providers or specialists
Availability of services in [Patient Name]’s preferred care setting
Lack of information about available care
Financial constraints
e.g., lack of insurance coverage
Communication barriers
e.g., language or cultural barriers
Difficulty navigating the healthcare system
Other
- Please specify factors

Were there situations where the lack of timely support in [Patient Name]’s serious illness led to complications?

Did these complications with [Patient Name]’s serious illness lead to going to the emergency room (ER)?

In the last 12 months, how many times did [Patient Name] visit the emergency room (ER)?

[Please report for the last 12 months before they passed away.]

Number of visits

Transitions in care settings

For the next questions we will ask question about transitions in care. "Transitions in Care" refers to the process where an individual changes where they received care and who provides that care.

“Care Setting” refers to the location where the patient receives care. Examples of care settings include doctor’s office or clinic, home, hospital, hospice or long-term care facilities.

Did [Patient Name] experience transitions in care settings?

What prompted these transitions?

Select all that apply.

Change in care needs
Cost issues
Proximity to family or caregivers
Access to specialized care
Other
- Please specify what prompted these transitions

From your perspective, how would you describe [Patient Name]'s overall experiences transitioning between care settings?

Very easy
Somewhat easy
Somewhat difficult
Very difficult

How well were [Patient Name]’s preferences for the setting of care respected and accommodated?

Completely respected
Partially respected
Not respected at all
I don't know

In your experience with [Patient Name]’s transitioning between care settings, what challenges did they face?

Select all that apply.

Coordination difficulties
e.g., delayed transfers, missing medical records, disrupted care continuity
Cost issues
Emotional and support challenges
e.g., stress, lack of support, difficulty adapting to new routines
Information and communication barriers
e.g., unclear information, missed services like counselling or medications
Physical and accessibility issues
e.g., transportation difficulties, inaccessible facilities, mobility challenges
Other
- Please specify challenges
OR
No challenges encountered

Services received at home

The following questions aim to understand [Patient Name]’s preferences and experiences in receiving care at home.

Home care services are professional support services that may assist with daily activities, medical care, mental health services, and more.

Overall, how satisfied was [Patient Name] with the care services they received at home?

Very satisfied
Somewhat satisfied
Somewhat dissatisfied
Very dissatisfied
[Patient Name] did not receive any care services at home

Which of the following services received at home was [Patient Name] most satisfied with?

Select all that apply.

Pain management
Medical care and consultations
Personal care or home support
e.g., bathing, dressing, meal preparation, housekeeping
Other healthcare services
e.g., Physiotherapy, Occupational therapy, Speech therapy, Dietitian or nutritionist services
Social work
Medical equipment or supplies
e.g., wheelchair, help using oxygen equipment
Mental health services
Spiritual counselling
Respite services for caregiver
Grief counselling
OR
[Patient Name] was not satisfied with any services they received

Which of the following services received at home was [Patient Name] least satisfied with?

Select all that apply.

Pain management
Medical care and consultations
Personal care or home support
e.g., bathing, dressing, meal preparation, housekeeping
Other healthcare services
e.g., physiotherapy, occupational therapy, speech therapy, dietitian, or nutritionist services
Social work
Access to medical equipment or supplies
e.g., wheelchair, homecare bed, oxygen equipment
Mental health services
Spiritual counselling
Respite services for caregiver
Grief counselling
OR
[Patient Name] was satisfied with all services they received

For which reasons was [Patient Name] dissatisfied with these services?

Select all that apply.

Services needed were not available in [Patient Name]’s area
Poor quality
e.g., concerns about provider competence, reliability of services
Services did not address [Patient Name]’s needs
I could not access enough services to meet [Patient Name]’s needs
Long wait times to receive services
Cost was too high
There was a language barrier
Other
- Please specify reasons

Which of the following services was [Patient Name] unable to access at home?

Select all that apply.

Pain management
Medical care and consultations
Personal care or home support
e.g., bathing, dressing, meal preparation, housekeeping
Other healthcare services
e.g., physiotherapy, occupational therapy, speech therapy, dietitian or nutritionist services
Social work
Medical equipment or supplies
e.g., wheelchair, help using oxygen equipment
Mental health services
Spiritual counselling
Respite services for caregiver
Grief counselling
OR
[Patient Name] was able to access all services at home
OR
[Patient Name] did not try to access these services at home

For what reasons was [Patient Name] unable to access these services at home?

Select all that apply.

Services needed not available in their area
Cost was too high
Lack of knowledge about available services or how to access them
Healthcare provider did not recommend the service for them
They were not eligible for funded home services
Scheduling issues
Spatial or access limitations of their home
Cultural or language barriers
e.g., services available did not accommodate their cultural or linguistic needs
Transportation issues
Quality concerns
Privacy concerns
Other
- Please specify reasons
OR
[Patient Name] did not want to access services at their home
OR
[Patient Name] did not need these services at home

Preferred setting of end-of-life care

“End-of-life care” refers to care provided during the final stages of a serious illness.

Did [Patient Name] have discussions with their healthcare providers about their preferred setting for end-of-life care?

Yes
No
Don’t know

Where was [Patient Name]’s preferred setting for end-of-life care?

Private home or apartment
Hospice
a special facility for people living with a serious illness who are nearing the end of life
Hospital
Seniors’ residence
Long-term care facility
Assisted living facility
[Patient Name] didn’t have one
I don’t know
Other
- Please specify preferred setting

What was most important to [Patient Name] when choosing their setting for end-of-life care?

Select top three.

Severity of medical condition
Pain and other symptom management
e.g., whether symptoms are under control
Availability of professional assistance
Availability of informal assistance
e.g., family, friends, or community members
Access to urgent care or specialists
Finances
Personal wishes
Family considerations
Social connections
Spiritual or cultural considerations
Other
OR
Don’t know

Overall, how much did access to care impact [Patient Name]’s choice of settings for their end of life?

To a large degree
To some degree
To a small degree
Not at all
Don’t know

Did [Patient Name] die in their preferred setting for end-of-life care?

Yes
No
Don’t know

Caregiver support

This section is designed to understand your experience as a caregiver, focusing on the support you received and your overall experience.

How long were you a caregiver for [Patient Name]?

Less than 6 months
6 months to less than a year
1 to 2 years
More than 2 years

How many hours per week did you usually dedicate to providing care for [Patient Name]?

Types of care and support may include providing personal care, help with household activities, transportation, meal preparation, etc.

Less than one hour per week
1 to less than 5 hours per week
5 to less than 15 hours per week
15 to less than 35 hours per week
35 hours or more per week

Did you live with [Patient Name] while providing care for them?

What kinds of care did you provide for [Patient Name]?

Select all that apply.

Personal care
e.g., dressing, bathing, toileting
Medical care
e.g., help taking medicine, wound care
Managing care
e.g., making appointments, communicating with healthcare providers
Help with household activities
e.g., housework, home maintenance, outdoor work
Transportation
e.g., to appointments, for errands
Meal preparation, help with eating or having food delivered
Banking, paying bills or preparing taxes
Psychological, spiritual and emotional support
e.g., social visits, outings
Financial support to help pay for services
Other
- Please specify the kind of care you provided

Did you have an assessment to determine your own needs for support as a caregiver for [Patient Name]?

Support for caregivers might include training, support groups, home care and temporary respite care for the person you take care of.

Yes
No
I don’t know

Overall, did you receive the help and support you needed to care for [Patient Name]?

Yes, totally
Yes, partially
No

In your role as a caregiver, where do you feel more support would have been the most beneficial?

Select the top three.

Enhanced communication with healthcare providers
e.g., better clarity and more information
Professional homecare services
Caregiver training
e.g., training on organizing care, giving medications, changing dressings
Respite care
e.g., to enable a break from caregiving duties
Financial support
e.g., assistance with expenses
Work flexibility
Emotional and psychological counselling
Relief from other responsibilities
e.g., childcare, meal preparation, and housework for your own household
Dedicated personal time
Peer support
e.g., connecting with other caregivers for shared experiences and advice
Other
- Please specify the area needing more support
OR
I had all the support I needed

Please indicate your level of agreement with the following statements.

[Patient Name]’s healthcare providers were always willing to answer my questions
- Strongly agree
- Agree
- Disagree
- Strongly disagree
When I felt I needed help with caregiving responsibilities I knew where to get support
- Strongly agree
- Agree
- Disagree
- Strongly disagree
I knew where to go when I needed information regarding my caregiving responsibilities
- Strongly agree
- Agree
- Disagree
- Strongly disagree
Overall, I had a positive experience being a caregiver for [Patient Name]
- Strongly agree
- Agree
- Disagree
- Strongly disagree

Sources of information

The following questions aim to understand where the person with a serious illness found information about their serious illness, resources and support.

Did any of [Patient Name]’s healthcare providers provide them with helpful sources of information (e.g., as brochures, websites, support groups) for their serious illness and care options?

Yes
No
I don't know

From your perspective, did [Patient Name] have sufficient opportunities to discuss and ask questions about their illness and care with their healthcare providers?

Yes
No
Not applicable

Have you and [Patient Name]’s family members also been provided with necessary information about [Patient Name]’s serious illness and care options?

Besides healthcare providers, where else did [Patient Name] seek information for the care and support they needed for their serious illness?

Select all that apply.

Local, provincial, or national organizations
International organizations or resources
Internet search
e.g., Google
Health-specific websites or online forums
Social media, blogs or vlogs
Family, friends or community members
Traditional media
e.g., books, magazines, TV, radio
Educational institutions
Spiritual groups
Other
- Please specify the source of information
OR
[Patient Name] did not seek additional information
OR
Don't know

Cultural considerations

The following questions aim to understand [Patient Name]’s unique experiences, preferences, and challenges in respect to their culture or spirituality while receiving care for their serious illness.

Overall, how comfortable was [Patient Name] discussing their cultural needs with their care providers?

Very comfortable
Somewhat comfortable
Not comfortable
Not comfortable at all
Not applicable

Overall, how would you describe the care providers' sensitivity to [Patient Name]’s cultural needs?

Cultural sensitivity is awareness and respect for another’s cultural beliefs, values and practices.

Very culturally sensitive
Somewhat culturally sensitive
Not culturally sensitive
Not culturally sensitive at all
Not applicable

What types of cultural or spiritual misunderstandings or barriers did [Patient Name] encounter?

Select all that apply.

Difficulties related to language or communication
Differences in care approach due to cultural expectations or beliefs
Dietary or food-related
Misinterpretation of cultural or spiritual rituals or practices
Lack of accommodation or privacy to carry out cultural practices
Inappropriate remarks or behaviour
Other
- Please specify type of misunderstanding or barrier
OR
[Patient Name] did not encounter any types of cultural or spiritual misunderstandings

Palliative care

Palliative care is a relatively new field of medicine that takes a holistic approach to caring for those living with a serious illness.

It can begin as soon as an illness is diagnosed, and it can be provided at the same time as someone is receiving treatments aimed at curing their illness.

Next are a few questions regarding palliative care.

Which of the following professionals spoke with [Patient Name] about palliative care?

Note: Press the help button (?) for additional information.

Select all that apply.

Family doctor or nurse practitioner
Palliative care specialist
Other medical specialist
Social worker
Psychologist
Patient advocate
Other
- Please specify the professional
OR
No one has spoken to [Patient Name] about palliative care

Considering the definition provided, to what degree would you say [Patient Name] has received a palliative approach to their care?

To a large degree
To some degree
To a small degree
Not at all

Please indicate your level of agreement with the following statements.

[Patient Name] received palliative care early in the progression of their disease
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Don't know
The people [Patient Name] was close to received support to help them cope with [Patient Name]’s illness
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Don't know
[Patient Name]’s care was coordinated across medical, social and psychological needs
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Don't know
The care [Patient Name] received for their serious illness has improved their mental health
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Don't know
[Patient Name] was supported by a team who were focused on their well-being
- Strongly agree
- Agree
- Disagree
- Strongly disagree
- Don't know

Quality of life encompasses many aspects of life that contribute to well-being, including physical and mental health, personal beliefs, social relationships and other factors such as where we live.

With this in mind, please answer the following question:

To what extent did the care received by [Patient Name] for their serious illness affect their overall quality of life?

Improved significantly
Improved somewhat
No change
Declined somewhat
Declined significantly

Education of person living with a serious illness

What was the highest certificate, diploma or degree that [Patient Name] completed?

Less than high school diploma or its equivalent
High school diploma or a high school equivalency certificate
Trades certificate or diploma
College, CEGEP or other non-university certificate or diploma (other than trades certificates or diplomas)
University certificate or diploma below the bachelor’s level
Bachelor’s degree
e.g., B.A., B.A. (Hons), B.Sc., B.Ed., LL.B.
University certificate, diploma or degree above the bachelor’s level

Sexual orientation of the person living with a serious illness

This question collects information on sexual orientation to inform health programs that promote equitable access and treatment for individuals living with a serious illness in Canada.

Please answer to the best of your knowledge.

What was [Patient Name]’s sexual orientation?

Sexual orientation refers to how a person describes their sexuality.

Heterosexual (i.e., straight)
Lesbian or gay
Bisexual or pansexual
Or please specify
- Specify this person's sexual orientation:

Marital status of the person living with a serious illness

What was [Patient Name]’s marital status?

Was it:

Married
For Quebec residents only, select the "Married" category if your marital status is "civil union".
Living common law
Two people who live together as a couple but who are not legally married to each other.
Never married (Not living common law)
Separated (Not living common law)
Divorced (Not living common law)
Widowed (Not living common law)

Indigenous identity of the person living with a serious illness

Was [Patient Name] First Nations, Métis or Inuk (Inuit)?

First Nations (North American Indian) includes Status and Non-Status Indians.

If "Yes", select the responses that best describes this person.

No, not First Nations, Métis or Inuk (Inuit)
OR
Yes, First Nations (North American Indian)
Yes, Métis
Yes, Inuk (Inuit)

Sociodemographic characteristics of the person living with a serious illness

Select all that apply.

Was [Patient Name]:

White
South Asian
e.g., East Indian, Pakistani, Sri Lankan
Chinese
Black
Filipino
Arab
Latin American
Southeast Asian
e.g., Vietnamese, Cambodian, Laotian, Thai
West Asian
e.g., Iranian, Afghan
Korean
Japanese
Other
- Specify other group

Place of birth, immigration and citizenship of person living with serious illness

Where was [Patient Name] born?

Born in Canada
Born outside Canada

Was [Patient Name] a Canadian citizen?

Yes, a Canadian citizen by birth
Yes, a Canadian citizen by naturalization (Canadian citizen by naturalization refers to an immigrant who was granted citizenship of Canada under the Citizenship Act.)
No, not a Canadian citizen

Was [Patient Name] a landed immigrant or permanent resident?

A landed immigrant or permanent resident is a person who has been granted the right to live in Canada permanently by immigration authorities.

In what year did [Patient Name] first become a landed immigrant or a permanent resident?

If exact year is not known, enter best estimate.

Year of immigration

Language of the person living with a serious illness

Could [Patient Name] speak English or French well enough to conduct a conversation?

English only
French only
Both English and French
Neither English nor French

Total income of the person living with a serious illness

Now a question about total household income.

What is your best estimate of [Patient Name]’s total household income received by all household members, from all sources, before taxes and deductions, during the year ending December 31, 2023?

Capital gains should not be included in the household income.

Rounded to the nearest CAN$

What is your best estimate of [Patient Name]’s total household income received by all household members, from all sources, before taxes and deductions, during the year ending December 31, 2023?

Less than $20,000
$20,000 to less than $40,000
$40,000 to less than $60,000
$60,000 to less than $80,000
$80,000 to less than $100,000
$100,000 to less than $150,000
$150,000 and over

Open-ended question

Do you have any further concerns about the care [Patient Name] received for their serious illness, that have not been covered by this questionnaire? If yes, please let us know what they are below.

Enter your comments

Proxy question

Did someone help you complete this questionnaire?

Yes, someone helped me complete the questionnaire
No, I completed the questionnaire myself

Province

In which province or territory [do/did] [you/[Patient Name]] live?

Province or territory
- Alberta
- British Columbia
- Manitoba
- New Brunswick
- Newfoundland and Labrador
- Northwest Territories
- Nova Scotia
- Nunavut
- Ontario
- Prince Edward Island
- Quebec
- Saskatchewan
- Yukon
OR
Outside of Canada

Administrative information

To avoid duplication of surveys, Statistics Canada may enter into agreements to share the data from this survey with provincial and territorial ministries of health. The ministries of health may make the data available to local health authorities.

Provincial and territorial ministries of health and local health authorities would receive the survey responses and the postal code.

To avoid duplication of surveys, Statistics Canada may enter into agreements to share the data from this survey with provincial and territorial ministries of health and the Institut de la statistique du Québec. The Institut de la statistique du Québec and the ministries of health may make this data available to local health authorities.

Provincial and territorial ministries of health, the Institut de la statistique du Québec and local health authorities would receive the survey responses and the postal code.

These organizations have agreed to keep the data confidential and use it only for statistical purposes.

Do you agree to share the data you provided?

[If you are answering on behalf of someone else, please consult that person./If you are able to, please consult [Patient Name] before providing a response.]