Now that life has taken a sharp turn with the diagnosis of a life-threatening condition, it is time to get things in order. Being prepared for whatever the future may hold will help you in your role as caregiver. There are five topics you may want to consider:
- Informed consent and capacity to consent
- Advance care planning
a) Do Not Resuscitate (DNR) and Allow Natural Death (AND) orders
b) Medical Assistance in Dying (MAiD)
c) Organ and tissue donation
- Financial support
a) Medication Costs
b) Provincial programs
c) Federal programs
If you haven’t already done so, one of the most important tasks is to help your care recipient create or update their advance care plan, power-of-attorney, and will.
Advance care plans, powers-of-attorney, and wills must be signed while the maker understands the content and consequences of what they are signing. Various medical conditions including dementia can result in a loss of capacity, either temporary or permanent.
Below are descriptions from Health Canada of Informed Consent and Capacity to Consent, explained in terms of consenting to treatment, but the same principles apply to signing any legal document. Note that they are written for the care recipient directly, rather than for a caregiver.
1. Informed Consent and Capacity to Consent
Informed consent [from Health Canada]
Health care practitioners are required to ensure that they have the informed consent of a patient before providing treatment. Informed consent requires that you:
- are consenting voluntarily, free from outside influences
- have been fully informed about the nature of:
- your illness
- purpose of the treatment
- alternative options to the treatment
- the risks and benefits of receiving or not receiving the treatment
- have the capacity to consent
Capacity to consent [from Health Canada]
You are considered capable of consenting to treatment if you are able to understand:
- the information that is needed to make a decision about your treatment
- the consequences and risks of the decision
The health care provider proposing the treatment must assess whether you are capable of giving consent. In Nova Scotia physicians and psychologists are able to carry out such a capacity assessment, as are occupational therapists, registered nurses, and social workers who have been certified to do so.
Note that someone can be found competent to make one decision (what to eat and drink) but not another (to refuse surgery). Someone can also be considered capable to consent one day but not the next.
Decisions about end of life require informed consent. If you are concerned if you will be unable to consent at the appropriate time, you may want to consider:
- setting out an advance care plan
- selecting a substitute decision maker
CNS recommends everyone have a valid and current advance care plan, power-of-attorney, and will, regardless of age or medical condition. Serious medical conditions or accidents can arise without notice, often leaving families facing tough decisions. The 24-minute Netflix* documentary Extremis presents some stark examples of what happens when these documents are needed to provide direction but are not in place. (*Note: Netflix is a streaming service available only by subscription. If you do not have Netflix, perhaps you could watch Extremis with a friend who does.)
2. Advance Care Planning
Advance Care Planning (ACP) is exactly that - making plans in advance for care. It has also been called a living will, a medical or enduring power-of-attorney, or a personal healthcare directive.
These plans are made in case someone is unable to speak for themselves, whether it is due to advanced illness, heavy medication, cognitive impairment, or acute pain. The plan can address needs for personal care, medical care, or end-of-life care. The ACP may also include a Values Statement about what is most important to the person (see below for further details).
There are two types of ACP, short and long forms, and these are described below.
Your ACP is important for several reasons.
- you are more likely to have your end-of-life wishes followed
- family will have less stress and anxiety
- you and your family are more likely to be satisfied with your care
- fewer interventions at end of life
- better quality of life and death
Ideally, we would all have an ACP when we are well and fully functional. However, some people have not put a plan in place. Having an ACP removes the heavy burden of decision-making from family members who may not agree on the best path forward. The objective is to spare you or the Substitute Decision Maker (SDM), sometimes called the Delegate, from having to make decisions in a medical crisis or any highly emotional situation. Of course, frequently the caregiver will also be the SDM.
Having an ACP puts your care recipient in the driver’s seat, even if they are no longer able to state their preferences. It may give direction on where they want to live, what kind of care they want, and about who will speak for them when they cannot speak for themselves. In a perfect situation, the Substitute Decision Maker would have no decisions to make. All direction would come from the ACP, reducing stress for you as the caregiver and, in many cases, the SDM.
Communicating wishes are vitally important as portrayed in I Didn’t Want That, a 6-minute video from Dying Matters highlighting 5 different scenarios.
The article Why it pays to plan your end-of-life care describes how sharing end-of-life wishes with only one member of the family can cause conflict. At such an emotional time, it can be difficult to consult with all family members. The brother or sister who does not feel heard may, in their frustration, say something harsh in trying to make their point. That can lead to fractured relationships at a time when you need the love and support of all family members.
When there is a life-limiting diagnosis, the Palliative Care Team is able to plan for what end-of-life might be like based on their knowledge of the medical condition and symptoms. If the ACP does not speak directly to the situation that is emerging, the Palliative Care Team can use the values statement to guide them. An example of a values statement follows.
My beliefs and values
I believe that quality of life is far more important than length of life. For me, quality of life includes:
- Spending time with family and friends
- Making my own choices and decisions
- Being able to eat and enjoy meals
- Being able to communicate with others
- Being treated with respect for my body and being
- Working and being productive
When I think about what my death could be like, I take comfort in:
- Knowing any pain I have will be treated, even if that requires large amounts of medication
- Knowing that I will not be left struggling to breathe
- Knowing that I will be kept clean, safe, and warm
- Knowing I will have good care, including oral care and frequent moistening of my lips and mouth
- Knowing my life will not be prolonged unnecessarily
- Knowing my family will be with me if possible
- Knowing that clergy will be there to support my mother if she would like
Particularly if your loved one does not want to know about or discuss what is to come and wishes to leave all decisions up to you or someone else, it is important that an ACP exists and that it clearly states who has been chosen as the Substitute Decision Maker and who has been chosen as the alternate SDM. This is a short form ACP. This document must be dated, signed, and witnessed by someone other than the SDM or alternate. Note: You do not need a lawyer to create an ACP.
Some people who are asked to be a SDM are more comfortable in agreeing if there is an ACP giving them some direction. If your person would like to name a SDM and provide further details into their wishes, a longer form ACP is necessary.
There are a couple of good resources that will help you and your care recipient with this task. The national Speak Up campaign offers guidance through a booklet that you can download or fill out online. Another booklet Who Will Speak For You? has a very good exercise on pages 7-10 that will confirm whether the wishes of your person are understood by the SDM. It also contains information on the realities of CPR on page 28 and Do Not Resuscitate orders on page 29.
The PlanWell website has three short videos on the difference between medical care, intensive care, and comfort care. Links are on the right side of the page. It also includes a 7-minute video on CPR at the bottom of that page.
Dr. Atul Gwande’s 5-minute YouTube video titled When Should Dying Patients Stop Treatment? may be a good place to begin this conversation with your person. This video is based on his longer essay in the New Yorker, Letting Go.
If you would like to discuss other aspects of an ACP, please contact one of our Caregiver Support Coordinators by calling 1-877-488-7390 or emailing Info@CaregiversNS.org.
2a) Do Not Resuscitate (DNR) and Allow Natural Death (AND) orders
In Who Will Speak for You?, a DNR (Do Not Resuscitate) and AND (Allow Natural Death) are explained as follows. “Do Not Resuscitate (DNR) means that you do not wish to undergo cardiopulmonary resuscitation (CPR) or advanced cardiac life support if your heart stops beating or you stop breathing. It is a legal order, written either in a hospital or on a legal form, to withhold CPR and advanced cardiac life support.
The order for DNR is made on a specific form called a Do Not Resuscitate Form. After the DNR form has been completed and signed by a healthcare professional, make copies and add them to the personal directive and medical records, and give it to anyone concerned with your healthcare.
Paramedics who respond to a 9-1-1 call, for example, will respect the Do Not Rusticate order shown to them and will not initiate CPR. The DNR form is the ONLY instruction - written or verbal - that first-line responders to a 911 call can legally respect. Without the DNR form, they are bound by law to initiate resuscitation. Make sure your original DNR form is in a clearly visible location so that no misunderstandings occur under the pressures of an emergency.
Do Not Resuscitate (DNR) might sound to some as if life-giving treatment is being withheld. A DNR order does not affect any treatment other than intubation or CPR. People who have a DNR order can continue to receive chemotherapy, antibiotics, dialysis, or any other appropriate treatment. In other words, DNR does not mean “do not treat”, only “do not resuscitate”.
Another sample DNR form can be found on page 30 of Who Will Speak for You?.
In the healthcare community, Allow Natural Death (AND) is a phrase that is gaining favour as it focuses on what is being done, not what is to be avoided. An interesting comparison of AND vs DNR is found in the American Nursing Journal, Viewpoint: ‘Allow Natural Death’ vs. ‘Do Not Resuscitate’.
2b) Medical Assistance in Dying (MAiD)
On June 6th, 2016, the criminal code of Canada was amended to allow medical assistance in dying as a medical service across the country. Whether or not a person is in favour of MAiD does not change the fact that it is a legislated medical service available to any eligible person.
The Nova Scotia Health Authority states that “We respect our patients’ right to make informed decisions about their care and treatment options. That includes the option to choose medical assistance in dying, as allowed by law.”
There are several documents on the NSHA website that may help you understand the eligibility, process, and available options, in particular:
- FAQs for the public
- Forms and documents
If your doctor or nurse practitioner cannot perform, or does not wish to discuss, this medical service, you will be able to find answers your questions at the NSHA contact line at 902-491-5892.
Dr. Brian Goldman offers a rare glimpse into the life (and death) of a man who opted to receive Medical Assistance in Dying. In this 26-minute podcast from CBC’s White Coat, Black Art, titled I’m going out with my boots on, Tim Regan “used his last days to lobby for a clearer path to assisted death.”
2c) Organ and Tissue Donation
“The Nova Scotia government has passed legislation to increase organ and tissue donation. When legislation takes effect in mid-to-late 2020, every Nova Scotian will have the opportunity to be an organ and tissue donor unless they opt out.” Further information on this legislation can be found at the Government of Nova Scotia website.
In the meantime, anyone has the potential to be an organ donor. The Nova Scotia Health Authority website answers many questions, such as:
- How do I donate?
- Why should I donate?
- How does it work?
- How are donor families supported?
For more information about the Legacy of Life: Nova Scotia Organ and Tissue Donation Program, how to get involved, or National Organ and Tissue Donation Awareness Week information please contact Janet Gallant by email at Janet.Gallant@nshealth.ca or by phone 902-473-5049.
You can also indicate your preference to be an organ/tissue donor when you renew your Nova Scotia Health Card or Driver’s License, or by calling MSI at 1-800-563-8880 and a donor registration form will be mailed to you.
The Maritime Brain Tissue Bank was established to collect brain tissues and to make them available for researchers who are trying to better understand the causes of dementia. Understanding the causes of dementia and the neurodegenerative disease producing dementia may help us find more effective treatments in the future. If you wish to learn more about the Maritime Tissue Bank and/or donating tissues, you can visit their website at http://braintissuebank.dal.ca/.
3. Powers-of-Attorney (POA)
While an advance care plan designates someone to make medical decisions on your behalf, a power-of-attorney (POA) designates someone to make financial decisions on your behalf. The article Inside Powers of Attorney explains the powers this document bestows as well as the limitations that should be in place.
There are two types of POAs – general and enduring. The General POA is in effect when you are cognitively clear. Perhaps you are out of the country or in the hospital with a broken leg. In this circumstance, the General POA will allow the person you designate to represent you financially. Your ‘attorney’ will be able to enter into agreements, pay bills, carry out banking, and buy or sell items on your behalf. The General POA is no longer valid if you lose decision-making capacity.
An Enduring POA takes effect when you have lost capacity to make financial decisions and the attorney has all the powers described above.
The Legal Information Society of Nova Scotia’s booklet It’s in your hands: Legal information for seniors and their families has a comprehensive section on powers of attorney.
In addition to the Advance Care Planning and Power of Attorney, your care recipient it is important that they also have a Will. Their Will should name the person(s) who will execute their wishes (Executor or Executrix), order bills to be paid, collect debts, and it will specify what assets are bequeathed and to whom. Information and relevant links can be found on the Finances and Legal Matters page of our website.
If you have been asked to execute an estate, you should know that the role can sometimes take several months or even years to complete and may include many tasks other than the distribution of assets. These can include:
- securing the residence and assets
- beginning the probate process
- opening an estate bank account
- forwarding mail
- paying bills and closing credit card
- closing social media accounts
- notifying insurers
- applying for and collecting death benefits
- filing tax returns
- reporting progress and completion to Probate Court
Professor Faye Woodman, Dalhousie University’s Schulich Law School, explains why it is important to have a will and what happens if you don’t have one in the YouTube video of this public lecture - Mini Law School - What You Need to Know About Wills.
The Legal Information Society of Nova Scotia (LISNS) has on its website a sample will and memo designating items to individuals. Also, the LISNS booklet It’s in your hands: Legal information for seniors and their families has a comprehensive section on wills.
5. Financial Support
5a) Medication costs
Nova Scotians may be eligible for programs that will help with the cost of medication. There are several programs that may be of help to you and your care recipient.
- Seniors Pharmacare Program (65+ years of age)
- Family Pharmacare Program
- Drug Assistance for Cancer Patients
- Palliative Drug Program (for end-of-life care at home)
- Department of Community Services Pharmacare Benefits including
- Income Assistance clients (including Extended and Transitional Pharmacare clients)
- Disability Support Program
- Children in the care of child welfare, and
- Low Income Pharmacare for Children clients
A description of each of these programs including benefits, eligibility, role, cost, and coverage can be found on the Province of Nova Scotia website.
5b) Provincial programs
The Caregiver Benefit may be available to those who give care to a low-income adult with high care needs. This program is income tested, and the benefit is $400 per month.
The Supportive Care Program can support those who are 65+ years of age with a cognitive impairment or who those have received a diagnosis of dementia at any age. This program is not income tested, and the maximum is $500 per month with an additional $495 per year for snow removal. The snow removal portion of this program is income tested.
The application process for both the Caregiver Benefit and the Supportive Care Program are explained HERE on our website which includes links to further details.
5c) Federal programs
There are three federal programs that will help offset the loss of your income if you are taking time off from work to care for a seriously ill or dying person.
- Compassionate Care Benefit
- Family Caregiver Benefit for Adults
- Family Caregiver Benefit for Children
For more details on eligibility, duration, and maximum weeks payable, please see the Government of Canada webpage on EI Caregiving Benefits and Leave.
It is important to note that these programs may be available to relatives (married/family of origin) or someone who is like family (family of choice).
Canada Pension Plan Benefits may be available to anyone who has contributed an adequate amount to CPP through their working years. These benefits will help people who are disabled, terminally ill, their children, as well as their family after their death.
Canada Pension Plan Disability Benefits - Terminal Illness
Eligibility for this benefit requires confirmation from the doctor or nurse practitioner that the person applying for the benefits has a terminal medical condition - “a disease state that cannot be cured or adequately treated and that is reasonably expected to result in death within six (6) months”. Application instructions can be found on the Government of Canada website.
Canada Pension Plan Death Benefit
This is a one-time, lump-sum payment of $2,500 made to the estate of the deceased. The estate Executor/rix must apply to receive the payment. If there is no named Executor/Executrix, another person may apply, usually whoever has paid for the funeral expenses. For further information, please see the Government of Canada website.
CPP Survivor’s Pension
The Canada Pension Plan Survivor’s Pension is paid to the spouse or common-law partner (at the time of the death) of the deceased. Generally if the survivor is 65 years of age or older, they will receive 60% of the deceased’s pension. If the survivor is under the age of 65, they will receive a flat rate and a reduced percent of the deceased’s pension. For more information, including instructions on how to apply for the CPP Survivor’s Pension, please see the Government of Canada website.
The Stat article When Death is Imminent gives us the perspective of the Emergency Department staff, emphasizing the importance of having end-of-life discussions and appointing a Substitute Decision Maker.
A physician asks: because it can be done, should it be done? I Know You Love Me, Now Let Me Die looks at the whole person and examines quality of life vs quantity of life.
Dr. Atul Gawande is asked by Google to speak on his best-selling book in this one hour YouTube video “Being Mortal: Medicine and What Matters in the End”.
Watching this 13-minute TED Talk, Talk About Your Death While You Are Still Healthy, might help you come to a greater understanding of the importance of making your wishes about your funeral and death known. Bringing humour to a very serious topic.