Know who you are and what you want. This is important, especially in an emergency. My spouse knows my wishes. While there is no reason to be in pain for many death-related medical issues, there are extreme mesure we should not be given, e.g., CPR in the case of palliative care.
You need to understand the difference between palliative care (comfort measure, no more treatment) and FULL CODE. Read this, and you will understand. You must be able to tell your family if you want a full code, or comfort, which means pain killers, but no more treatment measures. My Dad, on his last legs (actually not ambulatory) was taking 8 meds a day. The LTC physician didn't see him, nor read his file.
Advance care directives ensure that your wishes are met. Doctors need counselling on how to talk to clients. Trick is to have emergency staff accepting these directives, or having them sent to a hospital if you are in LTC.
This is an excellent article:
Understanding CPR and DNR (This section has been reviewed and approved by the Cancer.Net Editorial Board, 5/05)
As you make your decision, consider the following points:
- Do you have strong personal, religious, or spiritual views about dying and care at the end of life?
- Would CPR likely enable you to return to a quality of life and level of activity that would be acceptable to you?
- Are there important tasks that feel unfinished? Do you need to say things to loved ones or complete financial tasks that will allow them to live better after you die?
- If CPR were partially successful, would you want to be placed on a ventilator?
- Do you have strong feelings about dying at home versus in a hospital setting? (CPR may increase the likelihood of dying in a hospital setting)
Physicians are good with euphemisms. Know your rights and demand the truth. Be prepared.
Understand what end-of-life care looks like, what it means, and your options.
-Canadian Elder Law
An advanced directive is a legal document prepared and signed by a person in advance of a severe illness or injury, which will guide health care providers when providing health care and treatment. It may give instructions -- i.e., state what treatment or care someone wants to receive or not receive if he or she becomes unable to make medical decisions (for example, because he/she is unconscious or in a coma). A health care directive is also used to plan in advance for situations where a person is no longer mentally capable of making her or his own health care decisions.
It is important to be proactive. Communicate to your family your wishes and needs once you are no longer able to function. This is a plan, not a treatment plan, but a conversation you have, perhaps a legal document, of how you want to be treated in the event of incapacitation on your part as a patient.
It is crucial that you designate someone to be your Alternate Decision Maker, especially if you do not have family members who may fulfill that role. In the case of this necessity, there is a series of choices the medical profession will go to to in a hierarchical order.
The issue is when you are no longer able to make your own decisions, your loved ones must know your wishes, and having a legal document gives them the power to do so. If you don't want to die on the way to the ER, or in a hallway, and if you want palliative care at end-of-life, then you must make your wishes clear. Do you want more treatment, even if the treatment won't cure you and will cause more pain? Do you want pain relief at the cost of consciousness?
Doctors need informed consent, and if you are incapable, they will seek consent from:
- Brothers or sisters, stepsiblings
- Grandparents and steps
- Grandchildren and their spouses
- Son-in-laws, daughters-in-law
- Father-in-law, mother-in-law
- Brother-in-law, sister-in-law
- Uncles, aunts, their spouses
- Nephews and nieces, their spouses
- Current or former foster parents, foster children, wards, guardians
As we become gravely ill, you must determine who you want to make these decisions. During the FOundations of Palliative Care Course we watched a movie outlining the steps a physician with MS put together with his wife. They discussed when to stop particular medications, when tube feeding or a respirator is no longer helping with quality of life, and when to give the DNR order.
To understand, here is more: ACE: Advance Care Planning
Ontario Seniors’ Secretariat
The Ontario Seniors’ Secretariat publishes A Guide to Advance Care Planning which is available for free on the Internet or by phoning 1-888-910-1999.
Power of Attorney for Personal Care (PDF) (POAPC)
• A document in which a person (the grantor) names a substitute decision-maker
(an attorney) to make personal care decisions, which may include wishes about
- Advance Care Planning and End of Life Decision-Making – More than Just Documents
- Advance Care Planning in Ontario
- Options for Advance Care Planning
- The Health Care Consent Act and the Substitute Decisions Act – 25 Common Misconceptions
April 12, 2011
(Ottawa) – Over 25 associations across Canada have joined together to champion April 12th as National Advance Care Planning Day, a day of awareness and action for Canadians. The Advance Care Planning National Task Force, a group representing professional organizations and non-governmental groups from across Canada, has developed the “Speak Up: start the conversation about end of life care” campaign to remind Canadians to think about and talk about their wishes for end of life care.