Toolkit for Advance Care Planning & Palliative Care Early Identification

Toolkit for Advance Care Planning & Palliative Care Early Identification2019-04-10T11:36:14-04:00

 

Toolkit for Advance Care Planning & Palliative Care Early Identification

For caregivers: family and friends, volunteers, community services, health service providers

This toolkit is to help caregivers understand the importance of preparing people to communicate their health care wishes and future decisions. These decisions are guided by values, beliefs, and what each person considers important in their life. This is advance care planning.

The toolkit also provides information about palliative care which is health care that aims to improve the quality of living and dying for individuals with declining chronic conditions or life-limiting illnesses. This is about physical, emotional, social, and spiritual health.

The toolkit includes information about:

Overview of the Toolkit
1. Introducing Palliative Care
2. Background
3. Development of this Toolkit
4. The Toolkit
5. Ongoing Support to Caregivers

To access the complete toolkit, please use this link:  HCC-ACP-and-Early-ID-Toolkit

Appendix #3 How to Participate Effectively: a map of the process
Appendix #6 Early Identification (Early I.D.) Postcard



Introducing the Caregivers’ Toolkit for Advance Care Planning and Early Identification of Palliative Care Needs

Who? 

This toolkit is for people who are caregivers to their family, friends, neighbours, clients, or patients.  Caregivers are both unpaid and paid and offer care in a variety of settings including the home, community services settings such as seniors’ day programs, doctors’ offices, and hospitals.

What? 

This toolkit is to help caregivers understand the importance of preparing people to communicate their health care wishes and future decisions.  These decisions are guided by values, beliefs, and what each person considers important in their life.  This is advance care planning. 

The toolkit also provides information about palliative care which is health care that aims to improve the quality of living and dying for individuals with declining chronic conditions or life-limiting illnesses.  This is about physical, emotional, social, and spiritual health.

The toolkit includes information about:

  • The best guides and tools for use in these discussions
  • Asking the right questions
  • How to help when someone is diagnosed with a chronic or life-limiting illness
  • What to do if you see a decline in a person’s health or change in behaviour
  • Who and how to ask for health services

Where? 

The Toolkit is available at Central West PCN and is currently only available in English. 

At the website, you can review the toolkit in sections or you can download the whole toolkit.  If you want to speak with someone about it, please call the Central West Palliative Care Network team at 905-796-4694, extension 2.

When?

You can use this toolkit at any time to learn how to discuss advance care planning with someone you care about.  It is never too early to plan for future health care needs and wishes.  As for identifying palliative care needs as early as possible, you can consider this when someone is showing signs of decline from chronic disease or life-limiting illnesses.  This includes changes in behavior such as eating or sleeping, usual daily activities, or changes that a trained health professional would recognize.

Why?

A better quality of life and dying is possible when you have spoken with someone you care for and know his or her preferences for future care.  Early identification helps to prepare everyone for death and permits time to prepare for and meet the wishes of the person dying, including the personal choice of where to die.  These are conversations that may be more comfortable for some people than others, but it can make such a difference to everyone involved.

Information was sourced through the gold standards framework and www.cwpcn.ca.


1. Introducing Palliative Care

1.1 What is Palliative Care

The Central West LHIN Palliative Care Network defines palliative care as a philosophy of care that is not limited to one’s end of life and should be available for people living with any illness, at any age and at any stage of an illness.  It is whole-person health care that aims to improve the quality of living and dying. It strives to help individuals and their families to:

  • address physical, psychological, social, spiritual and practical issues, and their associated expectations needs, hopes and fears;
  • prepare for and manage end-of-life choices and the dying process;
  • cope with loss and grief;
  • treat all active issues;
  • prevent new issues from occurring; and
  • promote opportunities for meaningful and valuable experiences, personal and spiritual growth.

Read more about Key Palliative Care Concepts and Terms

Palliative care is about:

  • building relationships and partnerships – a team approach
  • supporting people with life-limiting illnesses
  • living well and with hope
  • planning for the future
  • getting support for patients and their family
  • talking about what is important to patient
  • sharing patient’s goals of care                                                           
  • getting expert help when it is needed

According to the World Health Organization (WHO), palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

1.2 About Advance Care Planning and Early Identification

Advance Care Planning (ACP) is about preparing people to communicate their health care wishes and future decisions, guided by values, beliefs, and what they consider important in life.  It prepares people and the ones they choose to make decisions on their behalf when they are unable to do so about desired health care and treatment.  ACP is personal reflection and conversation about being prepared for future decisions. (conversation guide).  The goal is to deliver care in a way that addresses peoples’ preferences as they have described and discussed with them (advance care planning).

Early identification is about proactively identifying people’s needs to help ensure quality of life and quality of dying, as much in advance of death as possible.  It helps to prepare everyone for death and permits time to prepare for and meet the wishes of the person dying, including the personal choice of where to die (New updated Gold Standards Framework Proactive identification guidance).

1.3 Informal and Formal Caregivers

For purposes of this toolkit, informal caregivers are people not employed as carers and include but are not limited to family, friends, neighbours, and volunteers.  Formal caregivers are paid workers with varied education, training, and knowledge e.g. personal support workers, nurses, mental health workers, social workers, care coordinators, physicians and other members of the care team.


2. Background

The following provides information about palliative care in the Central West LHIN and Ontario.  It highlights the collective focus and effort of formal caregivers in Ontario to improve palliative care services.  See Appendix 1 for more detailed information.

2.1 The Vision for Palliative Care in Central West LHIN

The vision for palliative care in the Central West LHIN is to have all formal an informal caregivers in all settings talking to people about advance care planning and trying to identify palliative care needs earlier than is usually the case e.g. closer to the end of life.  Across the LHIN, the aim is for better connections amongst a network of caregivers that helps prepare people and have them experience quality living and dying.

2.2 Central West LHIN Palliative Care Network (CWPCN)

Central West LHIN Palliative Care Network is committed to putting patients and their family at the centre of every decision, regardless of age or illness and dedicated to building a palliative care system that meets people’s needs.  The Network is part of the Central West Local Health Integration Network (LHIN) and is a partnership of hospices, home and community care, hospitals, long term care homes and others committed to providing leadership to ensure high-quality palliative care services across the LHIN in Brampton, Caledon, Dufferin County, Malton, North Etobicoke, and West Woodbridge.  

2.3 Ontario Palliative Care Network (OPCN)

 The OPCN is a partnership of community stakeholders, health service providers and health systems planners working together to develop coordinated hospice palliative care services with the same standard of quality and availability across the province.  It was established in March 2016 by the Ministry of Health and Long-Term Care (the Ministry) to help achieve greater patient choice in hospice palliative and end-of-life care.


3. Development of this Toolkit

 This toolkit was developed by a group of formal caregivers serving residents of the Central West LHIN.  The group included organizations based in the community providing palliative care, home and community care, mental health and addiction services, and primary care.  It is a resource for use by formal and informal caregivers to help them have conversations with people about advance care planning, understand the importance and benefit of identifying palliative care needs early, and how to connect people to services at the right time.

It is recognized that informal and formal caregivers have different abilities to support advance care planning and early identification of needs.  This toolkit provides a common language amongst caregivers to communicate the palliative care needs of people with a life-limiting illness and their families and then helps them access services to help everyone cope as best as possible. 

For more information on the development of this toolkit, please see Appendix 2.


4.The Toolkit

4.1 ACP and Early I.D.: Roles for Caregivers in Different Settings

a. How to Participate Effectively: a map of the process

Here is a partial picture of a process map to guide caregivers in all settings to conduct Advance Care Planning (ACP) with individuals and identify their palliative care needs as early as possible, known as Early I.D.  See Appendix 3 for the complete and readable process map. 

The map is based on a proven model for palliative care recognizing that there are several stages including:

  • asking the “surprise question” – would you be surprised if this person were to die next year?
  • observing general decline in health and wellness
  • recognizing specific decline related to a number of diseases
  • determining the need for palliative care and coordinated care planning,
  • addressing physical, psychological, social, spiritual and practical issues, and their associated expectations needs, hopes and fears; and
  • bereavement support

The tools for use with the map are also identified and more detail on that is provided in the section 4.2. 

The process map is developed in “lanes”, showing the distinct role of some formal caregivers including physicians, nurse practitioners, and nurses in identifying specific decline versus all other caregivers – formal and informal.  These regulated health professionals practice in a number of settings and regardless of where they serve their patients, their qualifications position them to do more to assess the need for palliative care.  All caregivers are able to participate in Early I.D. and formal caregivers should do so within their scope of practice.

b. Instructions for Using the Map

Shown in Appendix 4 is an overview in a chart format of the map that will help caregivers to understand and follow the steps in the process as shown in the map. Each step, decision, and resource is explained in detail.  This chart together with the process map, training, and resources should adequately prepare caregivers to conduct both ACP and Early I.D.

c. Following the Process in Various Settings

Given the variety of care settings and health and social programs available, the opportunity to conduct ACP and Early I.D. presents to caregivers differently. 

For informal caregivers, deciding when to talk about Advance Care Planning is based on the relationship and on the caregivers’ level of comfort.  The tools in this toolkit help with what to say, but it may also require more than a casual relationship.  For Early I.D., it requires enough familiarity with someone that the caregiver notices a change e.g. in how well a person is sleeping and eating, if a person’s thinking is growing confused, and what a caregiver generally knows about that person’s health condition.

Three points of contact for formal caregivers are identified including intake, assessment, and re-assessment.  For Early I.D., it may happen through regular patient contact.  On observing a change in the person, this contact may prompt a re-assessment prior to a six (6) or 12-month update that is regularly scheduled.

It is important for organizations where formal caregivers work to incorporate policies and procedures on ACP and Early I.D.  This will help to ensure a change in practice occurs and everyone knows they are accountable for it.  Depending on the organization, policies and procedures may be uniform across the organization or specific to a program.  This should be determined so that formal caregivers are clear about expectations to conduct ACP and Early I.D.

d. Communication with Primary Care and LHIN Home & Community Care

Based on a person’s choice, caregivers can communicate observations and perceived need for palliative care to that individual’s primary care provider.  This likely requires a phone call to the person’s doctor or nurse practitioner.  Contacting primary care may depend on your relationship with the individual and the extent to which the caregiver is familiar with his/her other care providers.

The second option is to contact LHIN H&CC and again, share observations of the person’s general decline as you understand it.  H&CC will advise whether your Early I.D. was too early or if there is merit in H&CC assessing the person.  See Appendix 5 for details about how to contact H&CC, including by phone, email, or faxing a confidential referral.

4.2 Training and Resources to Conduct ACP and Early I.D.

The following components comprise the training and resources required to introduce
Advance Care Planning and to identify palliative care needs early.  This is particular to the Province of Ontario and more specifically, the approach in the Central West LHIN.  The training and resources are all based on best practices in palliative care.

Highlighted are two training sessions and related tools, as well as the resource adopted in the Central West LHIN for Early I.D., and available resources for caregivers and the individuals for whom they are concerned.  Also shared is information about accessing this toolkit and ensuring its continued relevance. 

a. Palliative Care 101 Training

The purpose of the training is to introduce participants to what is palliative care and how it helps patients and families, why early palliative care is important, and to orient participants to local palliative care services.  It is a one-hour session and was developed and is delivered by the Central West LHIN Palliative Care team.  See Appendix 5 for LHIN contact information and for details about public sessions or to book training for an organization.

b. Advance Care Planning and Consent (Speak Up!)

Speak Up Ontario is an initiative of Hospice Palliative Care Ontario (HPCO) in partnership with the Canadian Hospice Palliative Care Association (CHPCA).
Speak Up! is designed to improve awareness of Health Care Consent and Advance Care Planning (ACP), providing information, tools, and resources specific to the Ontario legal context.  Speak Up! includes a standardized training session which is 1.5 to two hours in duration that is delivered locally by the Central West LHIN team.  As with the Palliative Care 101 training, please refer to Appendix 5 for information about contacting the Central West LHIN to inquire about this training. 

Often, Speak Up! And Palliative Care 101 are available back-to-back as a single session.

c. Early Identification

The early identification (Early I.D.) approach reflected in the process map was adapted from the Gold Standards Framework tool developed in the United Kingdom.  It is regarded as the best practice in identifying palliative care needs early.

The Central West Palliative Care Network created a “postcard” for easy reference (see Appendix 6).  The key steps to Early I.D. as shown in the process are the surprise question – “would you be surprised if this person were to die in the next year?”, and observing general and disease-specific indicators of decline.  In practicing Early I.D., all caregivers – both informal and formal must act responsibly i.e. action is consistent with their training and qualifications.  While the conversations will be personalized and the settings will be different, caregivers will be acting with a shared understanding and a common language.

d. Resources (tools, multi-lingual videos, services, etc.)

As much as possible, individuals and their caregivers should be provided with resources that they can review on their own.  This includes print materials and information available online.  These resources are standardized and complement the formal caregiver tools like a Speak Up brochure.  Currently available print resources are shown in Appendix 7 and can be downloaded from the websites already referenced herein.  They can also be ordered from the Central West Palliative Care Network staff.  Please see Appendix # for contact information.

Caregivers can use the Central West Healthline resource database at centralwesthealthline for information about and resources for end-of-life or palliative care.  Information for informal and formal caregivers is also available at Central West PCN, the local Palliative Care Network web site. Speak Up! has tips and tools for starting the conversation about Advance Care Planning.

Multi-lingual videos are available through Heart House Hospice at Heart House Hospice.  The collection of videos are available in a variety of languages including English, Hindi, Urdu, and Punjabi.  They cover topics including wills and power of attorney, challenges of being a caregiver, and grief.

e. Policies and Procedures

Throughout the process map, agency policies and procedures are mentioned.  It is important for organizations that employ and have volunteer caregivers to revise policies and procedures to ensure clear expectations for Advance Care Planning and Early I.D.  It is anticipated that both ACP and Early I.D. will most often be integrated into practice as part of assessments, re-assessments, and possibly intake.  Documenting this Toolkit as part of caregivers’ resources is critical for consistent adoption across different caregivers and care settings.

4.3 Accessing the Toolkit (repository)

This toolkit is available as a PDF as well as part of this web page .  At the Network web site, you can scroll through the parts of the toolkit that are of most interest.  There are also links to the appendices herein as separate PDF documents.

4.4 Keeping it up-to-date

The Central West Palliative Care Network and the Central West LHIN Palliative Care team are responsible to maintain this toolkit.  As provincial and national standards evolve, they will be reflected in local practice and be incorporated in to this toolkit.  If you have questions or comments about the toolkit, please see Appendix 5 for details about calling or emailing the LHIN.


5. Ongoing Support

The Central West LHIN Palliative Care Network is dedicated to supporting and fostering a hospice palliative care system in the communities of the Central West LHIN that puts the individual and their family at the centre of every decision, regardless of age or illness.  This is in partnership with both informal and formal caregivers to support each person’s unique needs. 

Please see Appendix 5 for how to contact the Network.


6. Appendices

The seven (7) appendices listed in the Table of Contents and referenced throughout the toolkit follow on the next page.  Along with the toolkit, each one is also available as a separate document on the Central West Palliative Care Network’s web site.

6. Appendices
#1 Background on Palliative Care in the Central West LHIN
#2 Development and Purpose of this Toolkit
#3 How to Participate Effectively: a map of the process
#4 Instructions for Using the Map
#5 Contact Information for the Central West LHIN
#6 Early Identification (Early I.D.) Postcard
#7 Print Resources Available
#8 Members of the Central West LHIN Palliative Care Working Group



February 2019
Developed by the Central West LHIN Bramalea Sub-region Palliative Care Working Group
in cooperation with the Central West Palliative Care Network

Information was sourced through www.goldstandardsframework.org.uk/advance-care-planning and www.cwpcn.ca .