The Doctoring the Doctor Principle
I will fearlessly learn all I can about my loved one’s healthcare needs and become an integral member of his or her medical care team. “Fearless Caregiver Manifesto.”
Last year's discussion of Fearless Caregiver Manifesto Principle Five dovetails perfectly with a conversation we had at the Orlando Fearless Caregiver Conference last week. First of all, thanks to our wonderful friends – the Central Florida professional, advocate and family caregivers who joined us for the day. Thanks also to the members of our dedicated and knowledgeable morning Q and A Panel of Experts and our exceptional Central Florida Care giving Thought Leaders Panel. And congratulations to the Senior Resource Alliance for receiving the 2013 Central Florida Community Fearless Caregiver Award. Look to this space in the near future for pictures and videos of the event.
The conversation in question was about how challenging it is at times to get our loved one’s doctors to consider hospice care when necessary. So let’s review the facts:
What is hospice care?
Hospice is a philosophy of care. It treats the person rather than the disease and focuses on quality of life. It surrounds the patient and family with a team consisting of professionals who not only address physical distress, but emotional and spiritual issues as well. Hospice care is patient-centred because the needs of the patient and family drive the activities of the hospice team.
Where is hospice care provided?
Hospice is a concept of care. Not a place. In fact, the majority of hospice care in the nation is provided at home, but hospice can be provided in hospitals, stand-alone facilities or even in penal institutions
Why is it sometimes a challenge for doctors to consider hospice care?
I am afraid too many caregivers and even physicians don’t consider hospice soon enough when necessary. And I can tell you first hand just how important hospice can be—not only for your loved one’s care, but also for your own peace of mind.
According to the Harvard Medical School, physicians may delay bringing up hospice for a number of reasons. For one thing, doctors are committed to conquering disease, so referring a patient to hospice can seem like a sign of medical failure on their part. Many say they don’t want to take away a patient’s hope. Physicians may also fear losing contact with their patients, not realizing that they can and should be a part of the hospice team.
A few pertinent questions to ask your loved one’s doctor:
What are the chances that the treatment plan prescribed for my loved one will be successful?
What are the risks to my loved one from the treatment plan?
What are the chances that it will help improve my loved one’s quality of life?
Does my loved one’s condition fit the qualifications for hospice care?
Have you considered such care? And if not why not?
One of the first and most important concepts to learn as a Fearless Caregiver is that we are in fact an equal member of our loved one’s care team. Sometimes, it is up to us to make sure we can get our professional partners past their misinformation and even their fear to help them deliver the best possible care for our loved ones.
I will fearlessly assess my personal strengths and weaknesses, work diligently to bolster my weaknesses and to graciously recognize my strengths.
I will fearlessly make my voice be heard with regard to my loved ones care and be a strong ally to those professional caregivers committed to caring for my loved one and a fearless shield against those not committed to caring for my loved one.
I will fearlessly not sign or approve anything I do not understand, and will steadfastly request the information I need until I am satisfied with the explanations.
I will fearlessly ensure that all of the necessary documents are in place in order for my wishes and my loved ones wishes to be met in case of a medical emergency. These will include Durable Medical Powers of Attorney, Wills, Trusts and Living Wills.
I will fearlessly learn all I can about my loved one’s healthcare needs and become an integral member of his or her medical care team.
I will fearlessly seek out other caregivers or care organizations and join an appropriate support group; I realize that there is strength in numbers and will not isolate myself from those who are also caring for their loved ones.
I will fearlessly care for my physical and emotional health as well as I care for my loved one’s, I will recognize the signs of my own exhaustion and depression, and I will allow myself to take respite breaks and to care for myself on a regular basis.
I will fearlessly develop a personal support system of friends and family and remember that others also love my loved one and are willing to help if I let them know what they can do to support my care giving
I will fearlessly honour my loved one’s wishes, as I know them to be, unless these wishes endanger their health or mine.
I will fearlessly acknowledge when providing appropriate care for my loved one becomes impossible either because of his or her condition or my own and seek other solutions for my loved one’s care giving needs.
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Gary Barg is the Editor-in-Chief of Today's Caregiver Magazine, caregiver.com and the Caregiver Newsletter. You can received his newsletter for free by going to caregiver.com and signing up.