Navigators – Empowered Patients & Caregivers


Introduction  |  Empathy & Self-Care  |  Empowered Patients & Caregivers

Introduction

While we often work long-term with our sickest clients, our goal is to have them – or their caregivers – become autonomous and empowered, and to be able to take back control of their own health and healthcare.  Sometimes it takes a few hours and sometimes it is a slow process.  Some clients (or their caregivers and/or support systems) are ready and willing to hire us for the long-term because independence and empowerment are not an option.

At the very centre of our work is teaching the public, our clients and their support systems information that allows them to make their own decisions about their healthcare. We also get people thinking about who will be their voice when they are no longer able to speak for themselves.  This teaching is called Advance Care Planning (ACP).

Those who have started talking about and creating ACP documents are more likely to become Empowered Patients and Caregivers: adults who know their rights and speak assertively in advocating for themselves or their loved-ones.  

For this reason, ACP is at the absolute core of our work, values and mission.

We have made discussions about ACP a part of our intake interviews and encourage all clients to get documents in place. When we come into a situation of crisis management, discussions about Substitute Decision Makers and Representation are paramount and dialogue about verbalized or written wishes in an acute or end-of-life situation are critical.  We need to be able to have these talks with confidence in our knowledge of the information we are providing, compassion and sensitivity. 

You will be given access to our ACP Workbook for our workshop participants after you have completed this Module.  

Please plan on attending at least one upcoming ACP workshop (you will be given the list).  Then, we will want you to book an ACP workshop in your area.  Suggestions: with friends or family, at a local library or seniors centre.  One of us will be with you for at least one workshop to help answer questions and do a bit of cheerleading. 

Getting Started

When you have completed this module, you will have more information than most healthcare professionals do!  

There’s a lot of information to absorb… it certainly took years and information from multiple sources to assemble it.  

We’ve put in breaks and short quizzes at the end of every natural break in the information.  

The best way to make this information relevant is to work it through with someone: a family member, a friend, or someone you’ve worked with in the past who could really use some Advance Care Planning.  

Information in green is additional information for you that is not in the ACP workbook.

Part A: Advance Care Planning

Advance Care Planning is not any specific document; it’s an “umbrella” of end-of-life planning documents that allow an adult to plan ahead for serious illness, injury, and end- of life:

  • Health Decisions
  • Personal Planning
  • Financial & Legal Planning

Time for some personal homework:

As you move through this work…

  • Think about what gives your life meaning…
  • Think about who you would like to make decisions when you can’t speak for yourself.
  • Discuss your wishes for future health care with family and friends…
  • Talk to your doctor about your health care…
  • Record your choices.

Advance Care Planning is a discussion for ALL ADULTS of ALL AGES, regardless of health status or stage in life.  It’s actually much easier to begin these discussions early in our adult lives, while we are still healthy.  The conversations become the norm rather than an emotional issue when we are facing end-of-life choices and decisions.

Discussion point: Time to get a little picky… Words are important in healthcare.  This is one term many people (including those of the industry) use incorrectly.  Advance Care Planning is discussion and several documents.  This is often confused with an Advance Directive which are medical wishes when the adult is INCAPABLE (discussed at length below). It is an Advance Directive… not an Advance Care Directive.

For this discussion…  We are talking about “capable adults”… those who are mentally fit to make their own health decisions.  Any adults (over the age of 19) who are physically disabled and not able to readily verbally or electronically communicate, or those with mental illness or dementia, should be referred to Nidus.ca or an experienced Estate Lawyer for more in-depth counselling.

Note: Representation Agreements (RA) are only one of the ACP documents.  A Representation Agreement CAN be done with an adult who has mental illness or mild to moderate dementia who is capable of identifying a person they trust to assist or make decisions for them.  However, we are NEVER to assist these adults with their RA.  They are ALWAYS advised to seek legal council with an experienced ESTATE lawyer (and NOT a notary public).

Advance Care Planning starts the moment you have a discussion with your loved ones about your medical wishes at times of crisis and end-of-life.  It becomes more formal when you put those thoughts and wishes on paper and have them properly signed and witnessed. 

Advance Care Planning documents are in place until the moment you die.  Estate Planning Documents are not in force until the moment after you die.

Advance Care Planning Includes: Estate Planning Includes:
Financial Planning including “Living” insurance: disability, Critical Illness and Long Term care insurance. Financial Planning including Life Insurance

Representation Agreements

Naming an Executor
Advance Directives Estate Planning
Enduring Power of Attorney Will
Hospital levels of care: MOST orders  
No CPR orders  
Palliative and hospice care  

Understanding Medical Assistance in Dying (MAID)

 

No matter the age or current health status, we encourage adults to put this at the top of their to-do list and keep it there.  If they systematically get the work done (and, it is work) they will likely feel a sense of relief when their documents are in place and neatly bundled on the fridge or in the freezer.  (We’ll explain this shortly.)

Changing or Cancelling Advance Care Planning documents:

  • Personal circumstances change over time.  As long as they are capable, adults can change or cancel (revoke) any of their ACP documents at any time. (See Resources at end of the workbook.)
  • It is important to regularly review and make changes to your ACP when they believe it is necessary:
    • When a Representative moves, becomes ill or dies.
    • When their health changes.

Of extreme importance for presentations:

Engaging in Advanced Care Planning is voluntary and never mandatory (even when pressured by healthcare providers).  Your wishes are YOUR wishes. 

Don’t allow yourself to feel coerced or pressured, in any regard, by anyone.

Note: This includes hospital levels of care (Medical Orders for Scope of Treatment – MOST) to be discussed in Part C.

Encourage ACP participants to…

Put all of your ACP Documents where they are easily found…  First Responders are trained to look for all these documents on your fridge.

  • Suggestion: In your freezer in a Ziploc bag: your freezer is water and fireproof.

 Make Copies of relevant documents to take with you – or have healthcare providers make a copy and return originals to you!

Note: Ultimately, it is the responsibility of the patient or their substitute decision maker (SDM) or Representative to get ACP documents to healthcare providers.  There is no fool-proof way to make sure doctors and nurses will look for, read, or abide by these documents unless SDMs/Reps are diligent about their rights to information and ability to make decisions for the adult.

We have created an In Case of Emergency envelope for participants to take home, fill out, and put on their fridge.  We will introduce this to you on Training Day.

Patient Rights in BC

As per the Health Care (Consent) and Care Facility (Admission) Act (HCCFA), more commonly referred to as the  Health Care Consent Act and Representation Act  (At some point, it’s a good idea to familiarize yourself with these documents.)

  • To be fully informed of all treatment options.
  • To the recognition of your Representative or Substitute Decision Maker.
  • The Recognition of your Advance Directive.
  • To a Second Opinion.
  • To Pain and Symptom Management.
  • To refuse treatment.
  • To end your own life.
  • To assisted death.

It is important to note that in BC, we have some of the most robust healthcare legislation in Canada with the Health Care Consent Act and Representation Act.  However, the sad and frustrating reality is, there are few organizations or lawyers who help us protect our rights under these acts.  When patient rights are violated, we encourage patient and their substitute decision makers to make complaints to the Patient Care Quality Office.  (See Resources.)  This will be covered in more advanced Modules. 

We are the trickle-up effect.  As Navigator-Advocates, and through education, we are helping adults to become empowered patients, representatives, and caregivers and knowing and asserting our rights, and we will change the healthcare system, one patient at a time.

Note: We have compiled a detailed Resource List at the end of the ACP workbook with electronic links to webpages.  While we try to keep this list current, information and links change constantly.  Please let us know if you find outdated material or broken links.

Capable versus Incapable:

On the following pages, you will find many references about ‘capable’ or ‘incapable’.  These are medical terms. It is a doctor (often a psychiatrist or geriatrician) who will make this determination after extensive medical evaluations.  There are very straightforward situations, such as the patient being in a coma, but most situations are grey and doctors are reluctant to make this life-altering determination.   If the patient is receiving narcotics, decisions can be made as a dosage has worn off and before the next dose is given.  In early to moderate dementia, patients are still capable of making medical decisions based on their values and beliefs, even if they are no longer able to manage their daily affairs.

Under the law, you are presumed capable.  You can continue to make decisions until you are incapable of making these decisions.  ~ Public Guardian and Trustee

In a time of medical stress, various studies have shown that we hear and retain as little as 7 to 17% of what we are told, 10 minutes after speaking with our healthcare provider, and in our experience that is further clouded by emotional content.

Everyone entering hospital should have a trusted adult at their side!

Within 48 hours of being hospitalized, almost half of all adults 65 and older will need someone else to help them make at least one medical decision, and almost ¼ will need that person(s) to make ALL of their medical decisions.

~Fraser Health Authority, Advance Care Planning

When we are very ill or facing a difficult diagnosis, we must have someone at our side to take notes, to ask relevant questions, to assertively ask for answers, to question procedures and treatments.

It’s time to take a few minutes…

Think about the following:

  • In times of stress and difficulty, who provides you with support?
  • If you were unable to direct your own medical care, who would you want to make these decisions for you?

Note: We will discuss “Personal Planning” during Representation Agreements.

Financial Planning for Illness and Injury

As healthcare navigators and patient advocates, we have found there is absolutely nothing that consistently causes families more anguish and conflict than financial pressure.

A prolonged acute care hospital stay can cause financial burdens for families struggling with decreased income when a loved one is seriously ill: meals in the hospital, exorbitant parking fees, hospital to hospital transport for testing…  

Due to government cutbacks and devastating and cruel policies such as “First Available Bed” for residential care, families are forced to make decisions that had not even come into the realm of possibility: selling or mortgaging the family home in order to keep a loved one at home or being available put them in a private-pay residential care facility that is close to home.  These can be crushing financial decisions.

Talk to your financial planner.  Put your paperwork in order.  Leave a legacy, not a mess.

For those 19 to 50 years of age – Consider ADEQUATE private health insurance:

  • Disability (short term AND long term)
  • Critical Illness: Covers serious illnesses such as cancer, heart attack and stroke (and more, depending on the policy).  A predetermined lump-sum, is paid within 30 days of diagnosis and it can be spent anyway the insured wants.  There is no income requirement to purchase this insurance.
  • Long Term Care: covers some costs for at-home nursing or long term care when 3 or more activities of daily living (ADLs) can no longer be managed.

 

For those over 50 years of age:

  • Get and keep your paperwork and accounts in order.
  • Review your financial and legal documents with your Enduring Power of Attorney.
  • Consider having ADEQUATE funds that can easily be turned into cash.
  • Do NOT rely on being able to sell your home in order to finance illness, injury or living expenses.
  • Talk to a financial advisor!!

 

Examples of Common Health Expenses NOT covered by MSP and are likely not covered by Extended Benefits:

Low to High:

  • Accommodation for patients & family away from home for treatment.
  • Ambulance and hospital transfers.
  • Taxi rides to and from treatments.
  • Meals at hospitals
  • Parking at hospitals and medical offices.
  • Time off or reduced income for family and caregivers.
  • Based on yearly income (not assets) up to $3,000 per month for public residential care.
  • Private and semi-private hospital rooms if requested and NOT needed for nursing reasons (i.e., infection isolation)
  • Medications not covered by Pharmacare that can’t be ordered by a specialist under Special Authorization. (Generally newer drugs.)
  • Medical equipment such as walkers, wheelchairs, & home safety.
  • Private Pay Residential Care: $5,000 to $10,000 per month per person
  • Assisted Living Care: $3,000 to $7,000 per month per person
  • Independent Living: $2,500 to $5,000 per month per person
  • Private in-home nursing care averages $3,000 to $12,000 (24 hour care) per month.
  • International surgery $25,000 to $100,000 or more.

Quiz:

  1. At an ACP workshop you’re about to give, one of the participants says, “I’m not sure why my wife hauled me to this.  I’ve already got my Advance Care Directive done.”

Your most appropriate response might be:

  1. “There are several documents in an Advance Care Plan.  I’m sure you haven’t a clue what you’re talking about so why don’t you pay attention and we’ll see if you’re right or not.”
  2. “There are several documents in an Advance Care Plan.  We’ll be going through each of them and after the workshop, let me know what you have done and if there’s anything else that you might want help completing.”
  3. “There’s no document called an Advance Care Directive.  Are you sure you know what you’re talking about?”
  4. “I think you might be talking about your Advance Directive.  (He says, “Yes.”)  Did you happen to bring your document with you?  I’d be happy to look at it for you after the workshop.”

2. When does Advance Care Planning start?

  1. When you are given a life-limiting or life-ending diagnosis.
  2. When you turn 65.
  3. When you get your Representation Agreement and Advance Directive written.
  4. The moment you have a discussion with your loved ones about your medical wishes at times of crisis and end-of-life.

3. Once any of the ACP documents are written, they can’t be changed or revoked.

True or False?

4. In BC we have some of the strongest healthcare legislation in Canada through the Health Care Consent Act and the Representation Act.

Which of the following is true:

  1. All nursing and medical students are taught about these acts and have a full grasp of patient rights in BC.
  2. Patients have the right to decide to end their own life or medical assistance in dying even if their doctor disagrees with their decision due to religious grounds.
  3. The healthcare team will decide who will speak for the patient when he/she is incapable of making their own healthcare decisions.
  4. In a residential care facility, comfort and symptom care does not have to be offered to a dying patient.

5. When patient’s have been told difficult news by their physicians they can recall:

  1. 50 to 75% of what they were told for up to 1 day.
  2. 7 to 17%, 10 minutes after leaving the doctor’s office.
  3. Absolutely nothing… but they do remember if the doctor was arrogant.
  4. They get most everything right, most of the time.

6. One of the biggest stressors for families during acute illness is finances.  During an ACP workshop, appropriate discussions might be:

  1. Don’t worry about any of this.  MSP covers everything.
  2. Provincial home care services are adequate for most patients.  Private home care is rarely needed. 
  3. It’s important that you get your financial paperwork in order and talk to a financial planner about having emergency funds available.
  4. First Available Bed is a fair and equitable provincial policy that ensures patients are placed in residential facilities close to home or families.

7. PUBLIC Residential Care can cost (this question is a best-guess because we didn’t give you details):

  1. Nothing.  It’s free for everyone.
  2. Is based on INCOME (not assets) and is calculated at about 80% which can mean as little as ~$1,000 per month to a maximum of ~$3,000 per month.
  3. If you own significant assets you will need to pay for private residential care.
  4. Up to $10,000 per month

8. If a patient needs a special wheelchair (for any reason, including paraplegia, quadriplegia, or any other disability), it is covered by Medical Services Plan?

True or False?

Answers:

  1. b.  (Even though we might say to ourselves, A or C.)  As for D, as tempting as it is, don’t ‘give away’ your time.  Make an appointment prior to an upcoming workshop to review his documents (and charge $25 for every 30 minutes).
  2.  d.  The MOST important part of ACP is having the discussions.  They are appropriate for all adults at all ages regardless of health status.
  3. False: They CAN be revoked or changed at any time as long as the adult is still capable.
  4. Sadly, only b.  Nursing and medical students often have little to no introduction to these Acts.  Battles for patient choice to end their own lives (via any means), and Medical Assistance in Dying (MAID) are relatively new legislation.  And, very sadly, the majority of residential care facilities do not offer comfort and symptom management to those at end-of-life due to lack of nursing staff who are trained… even though, by it’s very definition, residential care is palliative care.
  5. b.  So, even as Navigators, we need to write accurate notes during client appointments and transcribe them as quickly as possible.
  6. c.  Serious illness and injury is EXPENSIVE! Leave a legacy, not a mess.
  7. b. For good or for bad, this is the calculation.  A person who has no assets but is receiving a pension may pay the same amount as a person receiving CPP and OAP but owns a $5 Million home.
  8. False. Some facilities will have a specialty wheelchair they can ‘lend’ patients but anything but the most bas
  9. basic wheelchairs (not including cushions) must be purchased at an average price of $2,000 to $20,000.  
Part B: Representation Agreements