Compassionate Advocacy
How to speak up, be heard, and get your loved one the good care he or she deserves
Many people feel shy, especially initially, about being assertive in pursuit of excellence in health care. If you are a spouse, family member, or caregiver of someone who has a life-limiting illness, or if you are ill yourself, you might have a natural reticence to 'speak up and be heard.' You might, for instance, feel a bit reluctant to notify your health care provider of the problems you're experiencing with wither your own health care or that of a loved one.
These concerns are not unusual.
It can be tough to speak up. But you should know that in the current health care environment, many health care providers committed to providing good care are delighted to hear from you about how they can improve the care you receive. Honestly, the health care system has its share of problems-as does any system. Unfortunately, people who don't speak up can inadvertently 'slip through the cracks,' sometimes receiving substandard care as a result.
Besides, you are the customer. Health care, even though relationship based, is still a service you, or Medicare, Medicaid, or private insurance, pay for. And inadequate or insufficient service is as unacceptable in health care as it would be anywhere else.
When there are problems-and almost inevitably there will be-first try to resolve the issue with the person with whom you are having the difficulty. If it's a communication problem or a personality conflict, or one you can't resolve interpersonally, it may be that you'll need to seek assistance from a supervisor or patient care representative.
Don't hesitate to do so: the person for whom you are advocating is counting on you to stretch beyond what may be your customary comfort level and speak out on his or her behalf
If it's an inadequate care or pain control problem, you will need to speak up, perhaps again and again. Remember, health care professionals have many patients to care for and are usually allotted too little time to do so as well as they'd like. So again, by keeping track of your loved ones symptoms, medications, and current health care issues, and by speaking up when you see a problem, you are helping health care professional provide the quality of care they strive for.
One of the coercive elements about assisted suicide is the seductive way in which ill people are sold a bill of rotten goods, told in as many words that because they have a limited life expectancy, they should get out of the way, put themselves out of our misery, save their families some cash, and check out prematurely.
As if those we love are merely a sum of their functional-or not functional-parts. Poppycock. We are human beings, not human doings. Our dignity is based on who we are, not what we can do.
Speak the truth kindly but firmly. Advocate powerfully but politely. Excellence in health care, pain control, and end of life comfort are available and attainable, but may not happen without your help. You have a responsibility-and a duty-to speak up for those who cannot speak for themselves. Lives are, literally, at risk.
The road to assisted suicide is paved, not only with good intentions, but with poorly delivered health care. Vulnerable people deserve better. And it will be up to you and to me to make sure they receive the care they need -so they can live with real comfort and in true dignity-no matter how many days, months, or years of natural life remain.
So please, take a moment: tell those for whom you advocate what a privilege it is to be allowed to care for them. When a person is ill and feeling poorly, or aged and feeling progressively less well, it is all too easy to imagine one's care is a burden instead of an honor, that those who love you would be 'better off' if you died prematurely and unnaturally. Obviously inadequately supported care can feel burdensome at times, but it is the situation, not the person, who is burdensome. And it is the situation which needs remedying, rather than the person who needs eliminating.
So let's change the situation, access good health care, and create adequate caregiver support. Let's make the commitment to construct positive systems of compassionate care. In addition to speaking to loved ones and to individual health care providers, you may want to also strongly consider lending your voice to the wider community as an advocate for true compassion, not false choices.
Make noise. Publically. And privately. Raise your voice to demand better care for all those who are made vulnerable by assisted suicide. Demonstrate your compassion in action. Exercise your free speech rights.
Let your elected representatives know that cutting health care for seniors, people with serious illness or disability in the context of legalized assisted suicide is not acceptable. Write letters to the editor or to your doctor, hospital, or health care institution about the need for improved health care, disability and caregiver support, and pain control rather than assisted suicide. Let them know you want health care you can trust with your life. Become a true compassion advocate.
Together, we can make a difference. We will make a difference.
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