Do you know what care you would like at the end of your life? 
New Advance Care Planning Program Improves Coordinated End-of-life Care

holding handsJane’s Story

Jane’s husband Bill was admitted to hospital following a terrible accident.  Like any other person, Jane expected her husband to live. Both she and Bill were not yet retired, living a healthy life and had never thought of having a meaningful dialogue about their preferences for the end-of-life. Bill had been on life support for more than a week when the doctor said, “I’m sorry, the news is not good. We have tried an operation to relieve pressure and drugs to reduce swelling. There are no other options to consider.” It was suggested that he be removed from the breathing machine.

Now was the time for a family meeting as Jane wanted to consult with her daughter and son on what decision she should make. No one was prepared for this difficult conversation. It was very emotional and difficult as Jane didn't know Bill’s wishes.  Her children agreed with the doctor’s decision but Jane was not convinced that it was time yet.  And so her husband continued to be in the intensive care unit with monitors and machines for a few more days while Jane questioned herself on what he would want if he could make the choice. Eventually Bill’s heart stopped two weeks after the accident. Jane and her family left the hospital emotionally drained and questioning whether the right decisions had been made. 

This story demonstrates situations that reflect common experiences when people have to make difficult decisions about end- of-life care.

Why does Advance Care Planning Matter?

An Advanced Care Plan (ACP) is a plan that provides the resident, their family and caregivers an opportunity to consider what medical and social care a person would prefer, or refuse, during a time of crisis or end of life. This plan is more than a single document; it is a holistic view of the needs and wishes of a person during end of life care and should help to define the persons’ personal desires regarding their end of life. An ACP helps to facilitate conversation, provide direction and reflects a person’s wishes.

Jane’s story represents the reality for many residents in Waterloo Wellington. Health care decisions are being made at a most emotional time without clear knowledge of the wishes of the patient. This is why the Waterloo Wellington Advance Care Planning Education Program is essential. To help people like Jane and Bill and their family have earlier conversations about what kind of care they would want for themselves in the future should they become incapable of consenting to or refusing treatment and who they want to make those decisions on their behalf. Communicating those wishes to one’s family and health care providers is important.

The benefits of Advance Care Planning for individuals and their families include:

  • Comfort in being prepared
  • Enhanced autonomy of the patient
  • Reduction of stress for substitute decision-makers
  • Personal wishes are respected and followed
  • Decreased potential for conflict within the family system

In Waterloo Wellington, there is the need for:

  • Greater awareness and more consistent training for local health and social care practitioners and collaborations that connect to end-of-life care
  • Standardized ACP protocols that are consistent with Ontario legislation
  • Greater engagement of residents in ACP to increase understanding and awareness of patient rights, as well as reduce anxieties and uncertainties about planning for potential incapacity at the end-of-life.
  • Greater engagement of the community stakeholders including lawyers, insurance brokers, and bankers to build their knowledge and contribution to promoting ACP

The Waterloo Wellington Local Health Integration Network (WWLHIN) Board of Directors approved an investment of $1.2 million over 3 years to Hospice of Waterloo Region to enhance the quality of care and the patient/family experience at end-of-life through improved Advance Care Planning for residents of Waterloo Wellington.

For more information:

Waterloo Wellington LHIN
E-mail:waterloowellington@lhins.on.ca
Telephone: 519 650 4472

Judy Nairn
Executive Director, Hospice of Waterloo Region
298 Lawrence Avenue, Kitchener, Ontario, N2M 1Y4
Phone: 519 743-4114
Fax: 519 743-7021
E-mail: hospice@hospicewaterloo.ca