As a Hospice nurse, one of the most common questions that I get is, “How do you deal with people who refuse treatments that can cure them? How can you just let them die?” As healthcare professionals, our drive is to help people, and our goal is usually to cure what ails them. Ethically, we know that patients have rights to make their own choices, but when it goes against our instincts and our own personal preferences, we end up in a dilemma. Our fears kick in and we scramble to find a way to convince or even force our patients to do what we see as the “right” thing.
But, is our version of “right” their version of “wrong?”
It really doesn’t matter what field you’re in, you’ll likely come across many situations where patients will decline your Medical advice. Parents decline vaccinations for their children. Cancer patients choose to forego curative treatments. Incapable patients sign out AMA. As licensed professionals, these situations can set our blood pressure on an upward trajectory in an instant. Even just the thought of it! But, why? We really need to sit down and consider WHY these situations are so upsetting to us. The most obvious answer is that we care so deeply for our patients that we are upset by the thought of them making these poor choices that can negatively impact them.
To some extent, this probably is true, but take some time to pause and really consider your true feelings and motivations.
Reality is probably in contrast to what you believe. In fact, patients who steer off course are more likely to be upsetting as a result of our training and goals. We, in the medical field, are trained to think a certain way. We look at statistics. We seek out answers in medical journals. We function in a world where algorithms and policies dictate our every move. We assume (whether consciously or subconsciously) that we have the RIGHT answers. We assume that patients need to be “educated” further on the CORRECT option. We desperately attempt to show them the percentages and then explain our “best practices” to them. When that doesn’t work, we dread the upcoming barrage of documentation that will be required in order for us to explain why we failed at corralling the patient through the medical system according to the care plan that we created. At the end of the day, most of our work doesn’t allow for patients to think or act independently, unless of course, they’re choosing an alternative that we have provided for them. There just isn’t a place for those who veer off course.
Understanding WHY you feel the way you do can help you to start making changes in your thinking as well as your approach with patients. Your first step in changing the way you practice is to understand what patient/human rights really are. No, I’m not talking about your facility or organizations version (Right to Confidentiality, etc). I am referring to the rights of human beings overall. The Universal Declaration of Human Rights was created in 1948 via the United Nations and lays out Universal rights to be enjoyed by all people of all nations. This document’s list of human rights is to be followed above all other, unless the person is in a state of lawlessness. Let’s take a closer look at a few of these rights…
Article 5-Freedom from Torture
While it may seem odd that I would choose an article that relates to torture, it is actually quite relevant to the medical field. While advancements have been great in our ability to control symptoms and cure disease, many treatments remain unpleasant at best. Long lists of side effects, death often included, are glazed over in commercial style when treatments are offered. However, patients who are thorough in their research may not want to trade disease for poison. Author Sherrilyn Kenyon once said, “Just because you can, doesn’t mean you should.” As medical professionals, we need to keep this quote handy at all times, and rather than telling patients about the barrage of treatments that they will undergo, try asking them what they are willing to endure in order to cure their illness. Their answers may surprise you.
Article 13-Freedom of Movement Within Your State/Country
This particular right is one of great debate. Freedom of movement? For whom? Under what conditions?
Our medical system has created efficient channels for getting people the help they need. We have acute care, subacute care, rehab, assisted living, personal care, and long-term skilled care. For every need, we have a fix. Unfortunately, there are many patients who are funneled into their perspective “need channel” without their own consent. Once an independent citizen, they become a product of the decisions of others based on being deemed “incapable” of making their own decisions. Don’t get me wrong. There are definitely situations where this scenario is appropriate. Severe dementias and neurological diseases are obvious answers. However, it’s important to consider your own biases before documenting opinions on a patient’s capacity and ensure that a difference of opinion is not be the foundation of this life-altering label. The diabetic who lives on candy is not incapable of making decisions; he/she IS making a decision, poor or not. The patient with several infected decubitus ulcers might be choosing to live on the streets, to spite the judgment of others, and just because a person is elderly and has fallen does not make him/her incapable of making decisions. Disagreeing with how people choose to live their lives does not give a healthcare provider the right to take away their choices of where to live and where to die. Note: Obviously, as licensed professionals, we need to protect ourselves legally when it comes to such matters. Document what you see. Do your patient education, document their response, and be sure to check with your legal department if you have any concerns before discharging a patient.
Article 18-Freedom of Thought and Religion/Article 19-Freedom of Opinion and Expression
Articles 18 and 19 deal with freedoms concerning thoughts, opinions, and religion. In our capacity as medical professionals, we hear all kinds of differing viewpoints from our patients. Everything from the idea that eating commercial dog wormer will cure cancer, to Ayahuasca as a treatment for PTSD (if you’re unfamiliar with the latter, there is a whole host of books and movies on the topic). It can be extremely difficult to watch a patients suffer, or even die, because they decline the assistance offered to them, especially if their basis for doing so seems outlandish. It’s in these moments that our whole capacity for empathy and compassion is tested. Wanting to do what we see as right, it’s easy to discount the importance of the patient’s viewpoints and beliefs. But, if roles were reversed (picture yourself in a Shaman’s tent in south America with a gaping wound, and you’re looked at as “crazy” for requesting antibiotics and wound care), you might hope someone would hear you out with an open mind. Do the same for your patients and show respect for their wishes by offering support where able. Remember, at the end of the day, patients have a right to make poor decisions. We have the right to disagree with them, but we do not have the right to take away their rights because we disagree.
If you find a conflict between the rights/freedoms of your patients and your own desires, how do you move forward? The key is to have empathy for the person as a whole and to respect his/her rights and desires as you would want yours respected. Basically, practice the Golden Rule. While patient education is a required task for most of us, we can do so without being forceful or condescending. Remember, we’re well trained in our field, but WE DO NOT HAVE ALL THE ANSWERS, ALL THE TIME. Do your required tasks, but take the time to understand the patient’s wishes, and then choose to respect, and even advocate for them. Be the professional that leaves the patient feeling empowered, respected, and heard!
Practical Tip: Make an effort as you go through life to find people interesting. It may sound silly, but the decision can really change the way you interact with others. Become interested in what they’re saying. Become interested in why they believe the way they do. Start using the words more often in statements such as, “That’s so INTERESTING.” You’ll be amazed at how this perspective gives you an understanding of others, but also reconciles any ethical dilemmas you may come across!