Below I’ve tried to provide a brief guide to the most prominent issues in bioethics to aid patients in their understanding of their encounters with medical staff.
When discussed by philosophers, the term “autonomy” can become complicated and difficult to pin down. In its most basic form, however, autonomy is defined as the ability to be “self-legislating.” As a patient, this means you have the right, so long as you are rational, to make all decisions affecting your body and health. Of course, in some rare cases, healthcare providers find a patient’s disagreement over treatment goals to be evidence enough that the patient is, indeed, not rational. For the most part, healthcare providers seek to protect the autonomy of patients.
Advance Directive Defined
An advance directive is a legal document that spells our your healthcare preferences in the event that you are unconscious or otherwise unable to make decisions on your own behalf. Besides stating specific treatment (or non-treatment) goals, an advance directive enables you to name who you would want to make decisions on your behalf when you are unable to make them for yourself.
Before any healthcare provider gives you treatment, you should know what treatment you are receiving, what the benefits of the treatment might be, any possible side effects and risks, and what alternative treatments are available. As a general rule, with most treatment decisions, doctors and hospitals will go over these details and then ask you to sign a consent form to indicate that you do understand the treatment, risks, and alternatives.
You may not notice that your doctor is seeking your informed consent. Occasionally, providers will go through this information in such an informal manner that patients may not notice they’ve actually just completed a consent process. In one sense, this approach is welcome, as the conversation feels natural and not compelled by policy. Indeed, many providers do provide this information as a natural part of their job, rather than as a policy requirement. However, it is good for patients to be aware that they have received information on which to base their consent before actually agreeing to any treatment plan.
Sometimes stressed providers in a hurry might rush things and simply hand you a form and ask you to sign it. You have a right to a thorough discussion of your treatment, however, and you should postpone your signature until you are certain that you understand the treatment to your satisfaction.
If you are lucky, you may find yourself receiving treatment from a healthcare provider who wishes to go beyond the basic consent process and actively involve you in your healthcare decisions. Providers who engage their patients in an ongoing and thorough conversation to arrive at a mutual decision on what treatments are appropriate are moving beyond mere consent to shared decision-making (SDM). SDM may not always be necessary or even appropriate, but when there are a number of treatment alternatives with various risks and benefits that must be balanced against personal desires and goals, patients involved in SDM are generally grateful for the opportunity.
You have a right to refuse treatment from a doctor. There are some exceptions: you may be unconscious and unable to give consent or you may be mentally incapacitated to the point that you are unable to make decisions for yourself. There are consequences to refusing treatment, however, If you refuse a treatment that your insurance company prefers, you may be denied coverage for other treatments, especially if they are more expensive, or you may be denied coverage for choosing “against medical advice.”
In the past, patients expected their conversations with doctors to remain private unless the doctor needed to share the information with a nurse or other person who needed it to provide care. Over time, the number of people involved in the care of patients has grown many times over. Now, medical records are stored electronically and shared with hospital staff, pharmacies, medical laboratories, and even technology companies who store and manage data for the healthcare industry. While information is only shared with those who have some role in your healthcare, the number of people who potentially have access to your information is larger than you might imagine. Most doctors and other providers want to limit access to your information as much as you do, and a candid conversation with them about your privacy will most likely be welcomed.
Our interactions with doctors are special and sometimes take on the quality of a confessional. We sometimes must share with doctors our most embarrassing moments and habits. Before revealing something too uncomfortable, you might ask the doctor about what absolutely must be recorded on an electronic health record and how the number of people who will see it.
Conflicts of Interest
Healthcare providers receive payments and other incentives from pharmaceutical and device manufacturers seeking to promote their products. This isn’t necessarily a bad thing in every instance, but it helps to be aware of different ways doctors make a profit. For example, some doctors own or partially own clinics that conduct medical tests, and ordering medical tests for patients increases their income. As part of the Affordable Care Act (Obamacare), the Open Payments Act (previously the Sunshine Act) requires that industry to report and make available to the public information regarding payments to doctors.
Surrogate Decision Making
In the event that you are unconscious or otherwise unable to make treatments for yourself, providers will seek surrogates to make medical decisions on your behalf. Usually, this will fall to the closest living relative, which can create controversy in some cases. If there is someone you wish to be your surrogate over other choices, you may be well advised to express this wish in writing before a problem arises. This is commonly done through an advance directive (see definition above).
You may find yourself in a situation where your doctor has nothing more to offer you but tells you of a drug trial for an experimental drug. It may seem the doctor is recommending the experimental drug, but you should clarify what the doctor really feels about the opportunity. When facing serious illness or death, fear can drive us to cling to the “best hope” out there, but you will want to get as much information as possible before agreeing to enroll. First, all lifesaving drugs were once experimental treatments, so the possibility of receiving great benefit from the drug trial does exist. On the other hand, some experimental treatments are not expected to provide therapeutic benefit and may pose risks to your comfort and health. You should not assume untested drugs are either safe or effective. Even if the drug offers you no hope of prolonged life and comes with considerable discomfort, you may wish to enter the trial in order to help the progress of medical knowledge. For some, the knowledge that they contributed to knowledge of their condition helps them feel their illness and death was not in vain.
Just as you have a right to refuse treatment, doctors sometimes have a right to refuse to offer it. The most common conflict arises when patients or their families want a treatment that doctors deem to be “futile.” When providers say a treatment is “futile,” they may mean one of two things: 1. The treatment will do nothing for the medical problem (e.g., a head bandage will do nothing to help a broken arm). 2. A treatment may do what it is intended (such as lower cholesterol), but a patient’s condition is so bad that treating the condition is a waste of time (if someone is dying from organ failure, why waste time treating blood pressure?).
The question of futility sometimes creates conflict between healthcare providers and patients or loved ones at the end of life. Families and loved ones may want to continue treatments that providers see as pointless based on the current state of the patient, who is likely in the active process of dying. Some patients and families are wary of agreeing to end treatment, as they fear it will lead to neglect. When signing an agreement to suspend treatment, you may wish to specify what types of care you want to continue (i.e, you may want to specify that the patient will continue to receive comfort care, pain medication, clean bandages, feeding, liquids, and so on).
End of Life
When you are in the final stages of life, you may wish to pursue aggressive treatment to prolong your life as much as possible, you may wish to preserve your dignity as much as possible, or you may wish to promote your comfort to the greatest extent possible. If you are conscious and rational, you can make these decisions based on consultation with healthcare providers or those you most trust. If you are not conscious, decisions regarding your care will be left to surrogate decision makers. If you have stated your treatment preferences and named your preferred surrogates through an advance directive, it will be easier for both your healthcare providers and your loved ones to follow your wishes.