Advance Care Planning

 

Advance Care Planning: An umbrella of end-of-life planning documents

It allows you to plan ahead for serious illness, injury, and end- of life.

  • Health Decisions
  • Personal Planning
  • Financial & Legal Planning

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
Life changes in an instant. Recently my 29 year old daughter went out for a snack at the local convenience store. She was wearing flip-flops and her toes got caught in the leg of a card stand. She tripped and the bridge of her nose hit a 2 foot concrete wall directly behind the display. She fractured three bones and was a hair breadth away from a serious brain injury. Serious conversations and decisions has to be made over the next couple of days. As her legal Substitute Decision Maker I was not able to assist or speak for her because she was still deemed capable even though her decision making ability was not optimal. She also didn’t have an Enduring Power of Attorney and that put me at financial risk because we share a home and living expenses. It was a very massive wake-up call for me because, after all the teaching I do I had not walked my own talk.Connie Jorsvik, Senior Navigator/Advocate, Patient Pathways
Patient Rights in BC

Serious injury, serious illness, and end-of-life are most often unexpected and can happen to anyone at any age.
Health Care Planning should be done by ALL adults of ALL ages.

As per the Health Care Consent Act and Representation Act (See Resources)

  • 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
What is Health Care Planning?
Health 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.
Health Care Planning documents are in place until the moment you die. Estate Planning Documents are not in force until the moment after you die.


Health Care Planning includes:
Financial Planning including “Living” insurance: disability, Critical Illness and Long Term care insurance.
Representation Agreements
Advance Directives
Enduring Power of Attorney
Hospital levels of care: ‘MOST’ orders
No CPR orders
Palliative and hospice care
Understanding Medical Assistance in Dying (MAID)
Estate Planning Includes:
Financial Planning including Life Insurance
Naming an Executor
Estate Planning
Will

Engaging in Health Care Planning is voluntary and never mandatory (even when pressured by health care providers). Your wishes are YOUR wishes. Don’t allow yourself to feel coerced or pressured, in any regard, by anyone.

If you have any complicated situation (disability, dementia, mental health issues, difficult family/support dynamics, or no support system at all), please consider consulting an experienced estate lawyer.

Changing or Cancelling Your Health Care Plan
It is important to regularly review and make changes to your ACP when you believe it is necessary:

  • When a Representative moves, becomes ill or dies
  • When your health changes

Your personal circumstances change over time. As long as you are capable, you can cancel (revoke) any of your ACP documents at any time.
When we are relatively healthy, we have different values and beliefs about illness and end-of-life than when we’re facing life-threatening or life-ending diagnosis AND as our illnesses progress, what we want can change radically. Continue to have discussions with your Decision Makers and change your Advance Directive as often as needed.

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 health care providers make a copy and return originals to you!

Consider using our ‘IN CASE OF EMERGENCY’ Form

In medical legal documents you will find 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

Financial Planning for Illness and Injury
As health care 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
Talk to your financial planner.
Put your paperwork in order.
Leave a legacy, not a mess.
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.

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

  • Disability (short term AND long term): find out what coverage you have; read the fine print.
  • 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!

Representation Agreement
These documents are your ‘umbrella’ of safety within the health care system so that the person you WANT to speak for you CAN speak for you.

It is the person YOU choose and not the “hierarchy” that the health care system would otherwise legally look to.

What is a Representation Agreement?

A Representation Agreement (a.k.a. an “RA”) is the ONLY legal document in BC used ONLY when you are alive, to authorize one or more people your trust to be your Representative, to help you manage your affairs and, if necessary, to make decisions on your behalf in case of illness, injury, or disability. An RA is the only way YOU can APPOINT someone to assist you or act on your behalf and to relay your wishes for your health care and personal care matters. It can also cover financial affairs.Bell Alliance LLP
The Representative has the same right to information and documents to which the adult is entitled whether the adult is capable or incapable.BC Health Care Consent Act
However, “An adult who is capable may do anything that he or she has authorized a representative to do.” Representation Act 36

In other words, your Representative is there to “assist” you when you are capable. They are not to collect information or make decisions for you while you are still capable, unless you have given explicit permission to do so.

In most other provinces a Representation Agreement is called a “Power of Attorney for Personal and Health”.

A POA for Health is valid in BC as long as, “It has the same instructions and intentions as a BC Representation Agreement and it, “Authorizes a person to assist the maker of the instrument to make decisions, or to make decisions on behalf of the maker of the instrument, respecting personal care or health care.”B.C. Reg. 162/2011, September 9, 2011

Permanent BC residents should convert their Power of Attorney for Health to a Representation Agreement as soon as feasible. If the POA for Health is refused, ask to see the hospital unit social worker, or call the Public Guardian and Trustee.

Advice and assistance for Representatives

Representative who is uncertain about the nature and scope of the representative’s authority, or who needs advice about anything about anything else relating to the role of the representative, may ask the Public Guardian and Trustee for guidance.RA 34 (1)

Who can help you prepare your Representation Agreement?

  • Do it yourself at No Cost
    • Nidus.ca (Webinars are frequently offered)
    • Forms on Government of BC website
  • For a fee:
    • Estate Lawyers (not all lawyers know about RAs)
    • Notary Publics who have experience with ACP
  • NOTE: a lawyer IS NOT required but consider seeking counsel for any complex situations.
  • Changing or Revoking a Representation Agreement

Do you NEED a Representation Agreement?

If you don’t have an RA, and you are INCAPABLE of choosing your Temporary Substitute Decision Maker (SDM), health care providers will look to the order of hierarchy. If you are happy with this order and/or these people can be readily reached, an RA is not necessary.
However, your Substitute Decision Makers should know your care wishes. If they don’t, they will make their own decisions on your behalf (and that is a difficult and sometimes messy situation with long-term implications.)

Enduring Power of Attorney
For a Health Care Plan, an Enduring Power of Attorney is recommended.
~ Nidus: http://www.nidus.ca/PDFs/Nidus_Info_POA-EPA_Differences.pdf

When would you need an EPA?

  • If you own property.
  • If you have investments or money that needs to be managed.
  • Note: You can do a simple EPOA without an Attorney or Notary Public (see Resources for link).

Difference between a Power of Attorney (POA) & Enduring Power of Attorney (EPOA)

  • POA’s and EPOA’s documents can only cover financial and legal affairs. Neither of them can cover health care or personal care matters.
  • You can use these documents to appoint one or more people to be your “attorney” to handle your financial and legal affairs. (Attorney does not mean lawyer; most people appoint a spouse, family member or friend in a POA or an EPA.)
  • A POA is in effect only when you are mentally capable; it immediately ends when you become mentally incapable.
  • An EPA is in effect when you are mentally incapable (which includes many situations while in hospital); it can also be in effect when you are mentally capable.
  • The document may not state the word “enduring” in its heading. Read the body of the document for the words, “while capable or incapable.”
If you don’t have and EPOA in place when you lose mental capacity to manage your own affairs, then the Public Guardian and Trustee [may take] over your affairs until someone else is appointed by the court. In the meantime (sometimes several months), NO-ONE, not even your spouse or a child, has the legal power to manage your affairs in the absence of an EPOA or a court Order. Do not assume your spouse, parents or kids will be able to make those decisions for you.Vanessa Dedominicis, LLP, March 8, 2015

Writing your Advance Directive will likely be the most challenging of your Health Care Planning documents. If you don’t have any serious health concerns, it can seem almost impossible. Let’s break it down…

The most important thing is…

TALK to the people who you want to relay your wishes for health care!

If you don’t know right now what you want, you don’t have to write an AD now. But, TALK to your family and friends about your values and beliefs so they have somewhere to start should you suddenly become seriously ill or injured.

Talk to your health care team

Not all health care professionals know about ACP, Advance Directives, & MOST. Speak to those who are knowledgeable.

  • Social Workers are all trained.
  • RNs are often well trained.
  • Hospitalists should all have this training.
  • Family physicians and Specialists will likely not have had this training.

Conversations about your wishes and Advanced Directives reduce conflict between health care professionals and Temporary Substitute Decision Makers (TSDMs)… particularly adult children).
Talking about this before we get sick helps our family members know what decisions to make in a time of stress and crisis. Having these discussions is a gift for your family.

What is an Advance Directive?
  • Previously known as a “Living Will” (which has NEVER been a legal document in BC).
  • It MUST directly apply to your health and MUST be something that your health care providers can translate into medical care.
  • It is only in force when you are INCAPABLE of communicating your choices for care and treatment.
  • It does NOT have to be a formal document.
  • It does NOT have to be written by a lawyer or notary public.
  • It can be a few sentences or a paragraph or two.
  • You need to sign and date it – and revoke any previous ADs if you have made them.
  • It must be witnessed by two people.
  • You can change it as often as you see necessary and as your state of health changes.
  • For an Advance Directive, simply state at the beginning of the form: “This Advance Directive revokes any previous Directives.”

Think about the following:

  • Do you have moral or religious beliefs that would affect your decisions for health care?
  • Do you want all efforts made to keep you alive, no matter what, no matter your disease or age?
  • Do you want to die ‘naturally’ after reasonable efforts have been made to treat you?
  • What represents a good quality of life to you?
  • Which do you value more: life quality or life quantity?
  • Think about your experience with serious illness for yourself or others you’ve been close to. What perspectives did that give you on illness and death?
  • What do you hope for your future?

Representation Agreements supersede Advanced Directives– unless you state otherwise in your Representation Agreement.

Do I NEED an Advance Directive?
Not necessarily…

  • Our views of what we think and believe we want now and what we want in a time of crisis can be much different.
  • If you have not been diagnosed with a life-limiting or ending illness, you don’t have anything views set in stone, you may not need an AD now.
  • If you trust that your family knows what you want (and you’ve intentionally discussed it) and if they are readily available should you need them.
  • If you trust that your doctor knows what you want and will be able to deliver that information to those who need it, when they need it.

Strongly consider an AD if…

  • You have been diagnosed with a life-limiting or life-ending illness.
  • You don’t want to, or feel you can’t, discuss your end-of-life wishes with family and friends.
  • Your substitute decision makers are not easy to reach by phone and/or will have to travel a great distance and/or it will be a burden for them.
  • You do not have a family doctor you feel is responsive to having a discussion of this type.
  • You’re a planner by nature and you’d rather be safe than sorry.

Legal requirements for Advance Directives

Your AD does NOT have to be made by a lawyer or notary public! They are likely unaware of current Health Care Planning medical orders for hospitals and residential care facilities. Important: There are no legal terms that must be used. Be completely comfortable with what is being put on paper. This is YOUR document.

Please note: that as a disease progresses you will need to review and change your AD as new information (treatments and prognosis) come to light and your desire to continue these treatments or allow a natural death. You will likely need to become more and more specific.

Remember…
Nothing is written in stone…
Any attempt to clarify what you want in a medical crisis is better than none…
But, more important than anything else is to talk to the people who will be speaking for you. If nothing else, have these conversations…

For more information please consider attending one of our Health Care Planning
Workshops or Contact Us for in-depth one-on-one conversations and planning.