Leading Practice Guidelines

End of Life Planning & Grief Support

Type: Wellbeing

Guideline: The organization ensures each person has had an opportunity to discuss their plans and wishes related to the end of their life. These discussions are recorded in the person’s Support Plan and include their family, support network and others as directed by the person. Where appropriate an Advanced Care Plan is developed and formalized.

People with life threatening or life-limiting conditions and their families have access to palliative and end of life care, receive care and support which meets their physical, emotional, social and spiritual needs and respects their dignity.

What does this look like?

The organization has a process and practice of proactively supporting people to think and plan for their end of life. This planning and discussion can include family, friends, support network members, staff and others as guided by the person. This discussion ideally occurs in advance of significant illness, however the timing, pace and scope of the conversations must be directed by the person and their family. End of life planning can cover one or all of the following topic areas:

• Advanced Care Planning
• Personal property – wills or bequeathing
• Funeral planning

Advance Care Planning is the process of discussion, knowledge sharing, and informed decision-making that needs to occur at any time when future or potential end-of-life treatment options and preferences are being considered or re-visited. The primary goal of Advance Care Planning is to seek consensus on what care will be provided at the end of someone’s life that reflect the best interests of the person.

An Advance Care Plan is the form used to record medical intervention decisions reached through the Advance Care Planning discussions. It can be completed where people, Substitute Decision Makers (SDMs) or health care professionals wish to define end of life care. An advanced care plan is different from a Health Care Directive.

A Health Care Directive is a self-initiated document that allows individuals to make health care preferences known in the event that they are unable to express them. In Manitoba, a Health Care Directive may indicate the type and degree of health care interventions the person prefers and/or may indicate the name(s) of a person(s) who has been delegated to make decisions (i.e. a “Proxy”).

In the absence of evidence to the contrary, a person who is 16 years of age or older is presumed to have the capacity to make a Health Care Directive. Generally speaking, a Health Care Directive is binding on health care professionals, unless the request for interventions is illegal or inconsistent with accepted standards of practice.

An adult who has a SDM appointed for health care decisions cannot create a Health Care Directive. Health Care Directives must, by definition, be self-directed, and are usually self-initiated, while an Advance Care Plan is generally initiated by a health care or support team.

While an Advance Care Plan must be consistent with any existing Health Care Directive, it does not replace it.

The organization ensures that documentation related to Advanced Care Plans or Health Care Directives is readily available in the case of an emergency. 

While Advanced Care Planning is a formal document that sets out the levels of care and intervention that is preferred at someone’s end of life, it is also important to talk about and document important routines, objects and people that bring comfort to the person.

End of life planning may also include helping the person and their family think about and plan for their personal property. The person may wish to make a will or simply informally bequeath a special item to a specific person. All such discussion must include the person’s SDM, if applicable. 

The person may identify wishes surrounding funeral planning. This may range from choice of music, religious readings or setting to seeking and paying for funeral expenses in advance.

Staff are aware of the wishes, preferences and directives of people they are supporting related to their end of life plans.

The organization strives to provide, facilitate and advocate for end of life care and support that is consistent with the person’s expressed wishes. Where the person’s wishes are not known, the organization is guided by family, support networks and by those that know the person well enough to help interpret what they would have wanted.

Support and care may include consideration for:

• Ensuring the provision of clear, accessible and timely information to the person about their health
• Support from palliative care or hospice care
• Pain and symptom management
• Spiritual, cultural or family traditions
• Emotional or psychological support for the person
• Contacting and arranging visits for family and friends
• Supporting family, friends and others who care for the person with logistical and emotional needs

The organization ensures that people receive accurate and timely information and appropriate support to deal with critical events in their lives such as loss of people or pets in their lives. Grief supports are provided in an individualized manner that are tailored to the person’s communication style and abilities.

Staff receive information and training on how to support someone through life threatening illness and death. This includes how to support people through grief and loss.

How would you know this is happening? (Evidence)

What you see in systems:

• Support Plans document discussions about end of life topics
• Advanced Care Plans or Health Care Directives are available for people, if applicable
• Staff training records

What you see in actions:

• People and their families experience sensitive, respectful, proactive support to explore their wishes surrounding end of life care.
• Staff are knowledgeable and aware of people’s end of life wishes.
• People supported who experience losses report feeling supported and informed through the process.