How to Be an Empowered Patient
By practicing some basic principles of palliative care, patients, their families and friends can feel confident and powerful
as they interact with medical and non-medical professionals during the course of treatment and beyond.
Receiving a diagnosis of chronic, progressive, or terminal illness can be devastating to patients and their families. Navigating the confusing labyrinth of treatment options can be frightening, making every one feel isolated and weak.
If we don’t have our own plan, if we have not discussed with our loved ones what we want, if we don’t even know what we want—we may find ourselves suddenly enveloped in a system (medical and non-medical) that is designed to meet its own needs, not ours.
This is where a palliative care approach can help us. And it can help those administering treatment do a better job because it clarifies our preferences and helps them select options that meet those preferences.
What Is Palliative Care?
The word “palliate” comes from a word meaning “to shield.” In the modern sense, the goal of palliative care is to alleviate suffering for patients, family members, caregivers, and others in the circle of concern.
Palliative care is actually what health care used to look like before the prevalence of advanced medical science. A hundred years ago, medicine was low tech and high touch. It was patient- and family-centered care that treated distress and sought to alleviate suffering.
Of course, some of the methods were less than effective and we didn’t have the pain-management drugs that advanced medical techniques and treatment have produced. But what we did have was a perspective of the patient as a human being, not a collection of symptoms. And the family culture was considered an integral piece of the patient’s overall sense of well-being.
In today’s world, palliative care is an adjunct to, not a replacement for medical technology. Its focus is to reduce suffering without curing. A palliative approach recognizes that healing can occur on many levels (emotional, psychological, spiritual) without a physical cure taking place. If an illness can also be cured, so much the better. But that is not the aim of palliative care.
Avoiding the Juggernaut
What often happens during initial discussions of illness and treatment is that patients and their loved ones are barraged with information, paperwork, and procedures—much of which they do not fully understand because they are still dealing with the shock of the diagnosis itself.
For example, when my husband Stephen’s colonoscopy tests came back positive for cancer, he was rushed to surgery within a few weeks. This happened before we met with an oncologist to discuss if immediate surgery was the best course of action or if chemotherapy to reduce the size of the tumor might have been useful.
At the time, we did not question the sequence of actions and it was not suggested that we might want to discuss Stephen’s case with other practitioners in our HMO before surgery. When we finally saw the oncologist, he was not happy that he had not been consulted prior to surgery.
Some Questions to Ask
Here are some basic questions you can ask your physician(s) as soon after diagnosis as possible.
- Does my health care plan cover palliative care?
o Don’t be surprised if the answer is “no.”
o And don’t despair. I’m going to show you how to include a palliative care approach on your own.
- Does my hospital/clinic offer palliative care concurrently with medical treatment?
o Palliative care is less likely to be available in facilities other than larger, urban hospitals or clinics.
- If so, how do I access it? See http://www.getpalliativecare.org/
- If not, can a palliative care consult be arranged through a local hospice or individual palliative care practitioner?
- If we proceed with treatment X, what do you expect will be the result? What can we expect in terms of side effects?
- What happens if we do not proceed with treatment X?
What Comprises Palliative Care?
Palliative care gains its effectiveness through the power of conversation and compassionate action. When patients and doctors discuss treatment options and preferences, patients are more likely to get the treatment they want and not be subjected to tests and procedures they do not want.
Palliative care addresses four basic areas of concern, which are often neglected by a medical approach focused on cure. These areas can be easily remembered with the acronym, “GAPS.”*
- G: Defining key Goals of Care, values and preferences for treatment
o Are you going for cure or comfort or both?
o How do you define quality of life?
o How aggressive do you want your treatment to be?
o At what point (if any) might you want to discontinue treatment?
o What type (if any) of life-sustaining treatment or technology do you want?
- A: Supporting end-of-life decision making and completion of Advance Directives
o Have you appointed someone to make medical decisions for you when you can’t?
o Have you and your loved ones and/or caregivers discussed choices for end-of-life treatment and care?
o Do you need assistance in having those conversations?
o What is your personal and/or cultural attitude toward the end of life?
o What Advance Directives do you have in place?
—–Medical Power of Attorney
- P: Providing ongoing Psychosocial and Spiritual Support
o Understanding the nature of pain that is not physical allows palliative care to support healing of the whole person, even if a medical cure is not possible.
o One of the questions we ask here is “How is it with your soul?” or “How is your heart?”—meaning: “How are you coping emotionally and spiritually with your illness?”
o The palliative care model recognizes that there are many kinds of suffering: mental, emotional, psychological, spiritual, and social.
o Paying attention to the holistic nature of the patient and his or her social setting provides comfort on many levels.
o We also ask: “How are your family members coping with your illness? Do they need additional help or support?”
o Comforting and supporting families and caregivers is an important part of this piece. It is often done by helping loved ones create a support network so that the entire burden of care does not fall to one or two people.
- S: Managing distressing Symptoms
o You shouldn’t have to just “put up with” distress such as fatigue, shortness of breath, nausea, or pain. Palliative care providers are experts at dealing with the physical discomfort of advanced illness.
o A couple of good questions to ask here:
—– “Are your symptoms and side effects getting attention and being well managed?”
—– “How much pain medicine do you want? Enough to handle your pain, even if that means you are not as awake and aware. Or, if necessary, are you willing to have some pain in order to maintain consciousness and communication?”
What If My Primary Care Physician Does Not Subscribe to Palliative Care?
While palliative care done concurrently with medical treatment is becoming more common, it is often limited to large urban hospitals that have economies of scale sufficient for its money-saving benefits to kick in.
If your medical facility does not offer palliative care, you can still implement many of its principles on your own. Here’s how to do it:
G: Goals of Care
o Ask yourself the questions about goals of care, values, and preferences for treatment.
o Write down what you want and ask your doctor what he/she can do to help you achieve your goals.
o Ask lots of questions, get second and third opinions, and don’t be afraid to challenge the mentality that reduces patients to statistics or a collection of symptoms.
A: Advance Directives
o Appointing a medical power of attorney—someone to make decisions for you if you can’t—is critically important. Medical providers must have a patient’s consent before proceeding with any treatment. And if you can’t provide it, someone else must have the power to do it for you.
o Likewise, a medical power of attorney (sometimes called a “healthcare agent” or “proxy”) can refuse treatments according to your wishes and preferences.
o The Five Wishes document is a good way to begin the conversation about end-of-life planning. However, it is not a strong guide to actual care. See http://www.agingwithdignity.org/five-wishes.php
o An even better resource for advance care planning information is Caring Connections. They provide downloadable advance directive documents specific to any state. They also have documents for designating your medical power of attorney.
o Complete a CPR Directive—a document that says you don’t want cardiopulmonary resuscitation if your heart or lungs malfunction or stop. You need a CPR directive because emergency personnel are obliged to perform CPR on anyone who needs it unless there is a legal method of saying no (CPR directive form, authorized necklace or bracelet, etc.)
- If you are over the age of 60, and especially if you are already ill or frail, your chance of surviving a CPR attempt is less than 10 percent. And the likelihood of trauma and brain damage is very high.
P: Your Psycho-social Environment
- Have a copy of this document on file with your doctor and hospital. And post one with a list of your medications in a place where emergency personnel would be certain to see it.
o Working with a counselor, social worker, spiritual director or minister (priest, rabbi, imam) of your choice can help facilitate what are often difficult conversations about the state of being in the family unit.
o Asking yourself: “How do I feel in my heart today?” is a good place to begin.
o Getting support for our personal needs in times of distress can make all the difference in how we get through the experience.
S: Symptom Management
o One thing to keep in mind is that palliative care practitioners (and eventually hospice providers) are more skilled than strictly medical personnel at keeping a patient comfortable.
o In fact, palliative care has some powerful tools and real science behind it when it comes to pain and symptom management.
o If your pain is not being adequately managed, you have every right to request a pain management specialist who will work with you to select from a variety of options that meet your own needs.
Summary: DIY Palliative Care
The point is that you can create your own palliative care program by defining your goals; making your preferences known to your doctor(s); creating a network of support for patient, caregivers, and family members; putting your financial and long-term plans in place; and requesting that your symptoms be managed in a way that supports your overall goals for treatment and quality of life.
Being an empowered patient means being effectively assertive. The result of taking a more active role in your treatment and care can be higher personal satisfaction with the treatment you are receiving and lower overall health care costs. It can help both caregivers and physicians do a better job of meeting patient needs. And it can alleviate suffering on many levels.
Palliative care is bringing the compassion back into the practice of medicine. It is both the past and the future of health care. It will be to the benefit of all if we work for it together. And you can begin immediately by adopting the palliative care “GAPS” approach for yourself and your loved ones.
*Source: Life Quality Institute
, Denver, Colorado. (303) 398-6326
Q&A about the End of Life
Stories of how others embraced the end of life
The Power of Story to Heal
More YouTube clips about specific end-of-life topics
A Beautiful Death: Keeping the Promise of Love
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