When we talk about patients' rights, let's be realistic about what they truly need.
One Patient's Bill of Rights
Until a few years ago, I paid little attention to our worsening health-care mess. It didn't directly affect me. I was healthy. I had a supportive family, a good job, nourishing leisure time. Then came "the lump," every woman's nightmare. It took a good bit of poking and prodding and a couple of doctors to arrive at a diagnosis: a malignancy in my left breast, probably caught early. First came anger, then tears, then discussions with my family and my doctors about long-term survival rates and my feelings about losing a body part. I opted for surgery, followed by a six-month course of adjuvant chemotherapy. I emerged from this process scarred, tired, and convinced I had done what I needed to do clinically to maximize my chances for staying alive and healthy. I was supported by relatives, friends, medical staff and fellow patients. I had an opportunity to observe the health-care system a lot more extensively than ever before. Though most individuals involved with my treatment were caring and competent, I began noticing that the system as a whole often fails to do what it needs to do to remain healthy, or even viable. I started developing my own personal "patient's bill of rights": 1) Every patient has a right to basic preventive medical care; anyone who cannot afford it has a right to a public subsidy. Nearly all conditions are more treatable if discovered early. Some chronic illnesses can be easily controlled or even prevented if their precursors are detected. Yet too few health insurance plans, public or private, pay for routine examinations or "preventive" care. I am convinced that putting both more mouth and more money into prevention will be needed to bring spiraling health-care costs under better control. 2) We have a right to information about any diagnosis and resulting prognosis, presented by a skilled, caring health-care provider. How you are told about your disease can be just as important as what you are told. Patients given a serious diagnosis get much sicker just after receiving it unless they are also given positive information about combating the disease. 3) We have a right to seek second opinions, and to choose from the widest range of medical options, including complementary therapies. Studies repeatedly show that patients respond better if they feel they have choices and some element of control, yet our attempts to "cut costs" often result in diminished choices for patients, or no choice at all. Even people with conditions that are considered terminal can double their average survival times and improve the quality of their remaining lives by banding together in formal or informal support groups. Traditional medical practices are invaluable, particularly for acute conditions and traumas. For chronic conditions, they may need to be augmented by caring, economical, sensible complementary treatments. 4) We have a right to relief from prolonged excruciating pain. We have a right to supportive healing environments. Overzealous clinical correctness and cost containment have diminished patients' capacities for healing. Medical facilities are understaffed, rules to prevent abuses Draconian, access to patients by family and friends restricted. Appropriate pain medication needs to be readily available. So do adequate staffs, and the best pain relievers of allthose who care about us. 5) We have a right to realistic estimates of medical costs and to flexible payment schedules for expensive procedures. It can be almost impossible for a patient to determine, much less handle, medical costs. Insurers rarely pay "list price;" health care providers sometimes raise their rates to cover "shrinkage" by insurance plans. Handling the paperwork is onerous for everyone some providers I know estimate they spend a third of total staff time filling out insurance forms, amid tremendous duplication, confusion and delay. Most other goods and services are available at stable prices on generous credit terms. There is little excuse for our tangled, expensive medical payments mess. 6) We have a right to be allowed to die with minimal medical interference once our bodies have suffered irreparable harm or are terminally deteriorating. On average, half of a person's lifetime medical costs are incurred during the last six months of his/her life. Far too often, we inflate the expense of a normal dying process out of fear or guilt. Our current system can encourage medical practitioners, patients, and their loved ones to view death as "the enemy" rather than the natural completion of a cycle. This is terribly expensive, both in monetary and emotional terms. To have a meaningful health-care system, we need to let go of a "death prevention" system. No rights are ever given without first being demanded. No rights come without corresponding responsibilities. If as patients, we want more rights, we will have to articulate them and fight for them, both individually and collectively. We will have to accept more responsibility for our own care. In this election season there has been lots of talk about health-care reform. However, unless patients, their families and their friends get actively involved, little will actually get done. We can create much fairer, more inclusive, more humane modes of avoiding or treating illnesses and traumas. We have made considerable technical progress. Now we need to incorporate some moral and spiritual progress to regain a balance we seem to have lost. It's time we got this unhealthy, uncaring, un-system on the road to recovery. Jinny Batterson is a computer consultant and free-lance writer who lives in Richmond. Opinions expressed on the Back Page are those of the writer and not necessarily those of Style Weekly.