Empowered Patients & Care Partners
An Empowered Patient is Informed & Supported!
But none of us can be empowered all of the time. The sicker we are, the less likely we will be able to advocate for ourselves.
And that is why we need empowered care partners at our side.
As an Empowered Patient:
You are in charge of your body, mind and spirit.
You want to be treated as a person and not as a patient.
You understand your rights as patients and representatives.
You think about what you want for your life when you are seriously ill or injured and make your family and decision-makers aware of your wishes.
When you are informed:
You are actively engaged in using your knowledge, abilities, and skills to manage your own and your family’s health care.
You communicate effectively with healthcare professionals.
You can find, understand, and use high quality health information to meet your health goals.
You are well prepared for medical appointments and leave understanding your condition, your tests, your treatment plan, and the goals of your medical care.
You can follow your health care professionals’ instructions to improve your health, take medications as provided, and undertake and adhere to recommended therapies.
You are concerned with your own safety and take steps to ensure that it is maximized.
You understand the health care options available to you and are well equipped to make informed decisions in collaboration with your health care providers.
You can find solutions when you encounter barriers to the health care that you need.
You can navigate within a fractured and overwhelmed health care system to get the care you need.
You have clarified your values and preferences for health care, have communicated them to your family and health care professionals, and have all your documents prepared and easy to find.
Why Women Particularly Need to Plan Ahead for Serious Illness
More than 80% of the time, women are the primary care partners and caregivers. And, when we get ill – from minor colds to serious illness – we are much more likely to look after ourselves without the support of others.
“We are socialised to put other people’s needs ahead of our own,” Carolyn Thomas, author and blogger, Heart Sisters.
“And women’s homecoming can differ from men’s in a very important way: they typically get far less support. Women are more likely than men to insist that their families not be inconvenienced for the sake of their rehabilitation, resulting in family dynamics that can often be less oriented towards the patient’s needs.” Dr. Wayne Sotile, author of Thriving With Heart Disease.
As a cardiac nurse, I often had to advocate fiercely for some of my female patients when their families were expecting them to go home to resume their housekeeping – or even childcare – duties after a major heart attack or open-heart surgery. I would emphasise, “No, she cannot lift anything heavier than a teapot for the next six weeks!” On one occasion my patient was not even out of eyesight upon discharge when a grandchild was plunked in her lap.
In my experience, men are much more likely to look for home support and paid caregiving for their wives, than women are for their husbands.
Most of the participants in my workshops and webinars are women. They simply know they need to plan ahead.
Choose the right person to be your Representative. Often this is an adult daughter, sister or friend.
Think deeply about your values and beliefs and let your future decision makers know what you would want in the future and write an Advance Directive or Letter of Wishes.
If possible, put aside money or liquid assets so you are able to afford supportive care, either in the short-term (after injury, illness, or surgery) or over the long-term, such as private home support or residential care.
If you are a woman who puts others' needs above her own, serious illness can be serious illness leading to prolonged recovery time, rehospitalizations and even death.
When you are seriously ill, it’s okay to be selfish and assertively ask for support.
The Power of Empowered Care Partners
Care Partners are fundamental members of the patient’s team:
They are the eyes, ears and voice of the patient when they cannot speak for themselves.
They are the deliverers of the history, values and beliefs, and preferences for healthcare.
Becoming a Care Partner or Caregiver is something we rarely plan for. In the case of sudden or serious injury or illness, the need to step in can be sudden and overwhelming. One minute you are leading your own life and the next you are immersed in the healthcare system, learning the medical language and routines, spending significant time in the hospital and at your loved-one’s side. You will likely have to take time off work and your own commitments. You may even need to leave your own home and find accommodations close to the hospital. The financial expenses and loss of income can be overwhelming.
This can be a marathon, lasting weeks, months and years.
Representatives are Care Partners
As a care partner, ensure you have the power and authority to do your job – even if you are the spouse or adult child – and encourage the adult to put a Representation Agreement in place while they are still capable.
Being a Care Partner is a different role than a Caregiver. One person can be both the Representative and Enduring Power of Attorney but they are quite different roles and require two separate documents.
A caregiver is literally giving care and most of the time that is to a loved-one who is recovering from serious injury, is undergoing intensive treatments where they are weak and vulnerable, or when they have cognitive decline and frailty.
A Care Partner is a Personal Medical Assistant
They may simply be on standby as the Representative for the possibility of future health events.
When appropriate, attend medical appointments and take notes and write up summaries for the patient and other family members.
If and when the adult is too ill or frail to manage their own day-to-day planning, the care partner might step into more of the medical assistant role of setting up upcoming appointments, setting reminders and transportation, setting up and coordinating home care services.
You are massively important to your loved-one! You are there to make sure their values and beliefs and preferences for future care are upheld and honoured. You make sure those in our impersonal healthcare system know who the patient is as a person – their past and their present. And, you, above all others, are there to communicate, prevent errors, and prevent harm.
You matter. This article, above all else, is written for you. We are so glad you are there supporting the person you love and care for.
Build Your Team
Have thoughtful, purposeful and assertive conversations with your physicians and healthcare team about being included in all planning for your future health. This is easier with some doctors than others and a light approach until they get to know you might be necessary. Let them know your values and beliefs for future health care. In short, let them know that you are an engaged, informed and empowered patient and that they are a part of your team.
As difficult as it is in these times to find a new doctor, a doctor who does not see you as a partner in your own care might be doing more harm than good.
There is often a lot that needs to be done when you are seriously ill or injured and many hands can make lighter work.
Name a Representative who will have the legal authority to receive information about you to assist you while you are capable and act as you when you are incapable. See the education article on Who Will Speak for You: Representation Agreements.
Name an Enduring Power of Attorney because bills will need to be paid – and, possibly benefits applied for. See the education article on Enduring Power of Attorney in Healthcare Setting
Transportation: You may not be able to drive and volunteers to help you get to and from appointments and treatments will be helpful.
Social Network: Being seriously ill or injured can be socially isolating. As the patient or care partner, reach out to friends and family regularly and let them know how they can support you, even if that is just regular visits.
