Considering Consent at End of Life
by Lara Stewart-Panko
In thinking about respectful deathcare, the issue of consent looms large. In many parts of the globe, informed consent and informed refusal are cornerstones in health care. However, the actual implementation of true, free, informed choice can often be tricky in this subjective, imperfect world. Nuances, capacities, and other situation-specific factors sometimes make application challenging. This article will look at ways to champion consensual care.
In thinking about respectful deathcare, the issue of consent looms large. In many parts of the globe, informed consent and informed refusal are cornerstones in health care. However, the actual implementation of true, free, informed choice can often be tricky in this subjective, imperfect world. Nuances, capacities, and other situation-specific factors sometimes make application challenging. This article will look at ways to champion consensual care.
Increase Your Understanding of Applicable Legalities and Tools
Documents, options, and laws can vary by region, so it’s wise to get familiar with what’s in your area. Particulars worth learning about include advance directives, POLST (physician order for life-sustaining treatment), DNR (do not resuscitate) orders, power of attorney (also known as health care proxy or agent), hospital visitation form (designed for unmarried couples so a partner has clear visitation authorization), MAiD (medical aid/assistance in dying), and VSED (voluntary stopping of eating and drinking). In the United States, an excellent resource to learn more about all of the above is the Compassion and Choices website.
Perhaps you find yourself in a position of educating clients about options or supporting them in their decision-making process. In providing information, a primary way to honor consent and boundaries is to ascertain whether someone wants to have more information. We must take care to be as accurate as possible, refer to reliable resources and medical professionals, and be unbiased, ensuring we don’t impair informed consent by knowingly withholding or skewing information.
A useful tool that can guide a person’s decision-making is the BRAIN acronym:
B – Benefits: What are the physical and psychological benefits of a particular choice?
R – Risks: What are the physical and psychological risks of a particular choice?
A – Alternatives: Can other medical or alternative options address the concern?
I – Instincts and Intuition: What does your inner knowing say about this? Some people like to ask others, such as a loved one or trusted care provider, what their inner knowing is telling them.
N – Nothing: What if no action is taken? If no action is taken now, is there a time the decision should be reevaluated? If no action is taken now, could the passage of time reduce future options?
Be Clear About Boundaries
With the big hearts that end-of-life doulas and other caregivers tend to bring to the world of dying, it can be easy to slip into fierce protection of those we’re caring for, as well as passionate adherence to our own opinions. We may have past experiences that bring a charge to a current situation, impacting our ability to honor appropriate boundaries. We’re wise to stay vigilant to our own reactions to other people’s choices and behaviors, and to do what we can to engage with professional, respectful responses. In this regard, INELDA’s scope of practice and code of ethics are helpful documents to review on a regular basis.
Supporting Clients When a Care Provider or Loved One Goes Against Their Wishes
Depending upon the situation, you might:
- Privately check in with your client to see whether the client is aware that consent is being violated, and go from there.
- When in the presence of both your client and the other party, express to your client that you were under the impression the client wanted X but now Y is going to happen. You can ask whether your client has had a change of mind and is now consenting to Y.
- Support the client in self-advocacy. I was a doula in one situation where a client had a thorough discussion with her doctor with a nurse present, and she declined an IV medication. The doctor left the room and the nurse began administering the medication via the medication pump. I alerted my client, who then said to the nurse, “I just said I do not consent to that medication.” The nurse was clearly in disagreement with the client’s decision, stating, “Well, I guess it is your body,” before she stopped the administration and left the room upset. Of course, this type of behavior isn’t common, but sometimes consent can be overtly violated. I felt good about my choice to empower my client to speak on her own behalf as opposed to speaking to the nurse myself.
- If your client is nonresponsive or otherwise in a state where the ability to realistically discuss consent is compromised, and if there’s any doubt the care provider or loved one is unaware of the person’s wishes or has temporarily forgotten due to fatigue, distress, etc., you could gently ask whether that person is aware and offer a reminder. Referring to relevant paperwork can be helpful.
Develop Your Communication and Advocacy Skills
Consent can be impacted by social factors such as privilege and oppression, long-standing family dynamics, and other aspects of culture. Power imbalances can show up between people of different genders, classes, and ethnicities or simply in the doctor-patient dynamic. Even with an EOLD in an advocacy role, the same disparities can affect the processes and outcomes. Let us keep our eyes open and do what we can to counterbalance inequities, including checking our own privilege and blind spots.
Touch and sharing personal information are two areas where doulas need to ensure they’re working in consensual territory whenever possible. We might be direct: “I’m wondering if you’d feel comfortable if I hold your hand?” or, “Whatever you and I discuss privately is confidential, but I’m wondering if there are some things you would like me to share with others.”
If a client is unresponsive or otherwise unable to clearly communicate consent, we’re tasked with being tuned in to subtleties, and going slowly and being responsive if it seems we’ve gotten it wrong. “I’m going to place my hand under yours. Is that OK?” Pause. If the felt sense is a “yes,” do so. If it seems it’s a “no” at any point, gently remove your hand. It’s skillful to lay a safe foundation to make your clients’ expressions of consent and nonconsent easier for them. You can state that you want to do whatever feels best to them and that your agenda is to support their wishes, and you can consistently express appreciation when they do tell you what they want.
Verbal and body language can either empower or disempower. Let’s consider simple terminology: “You can refuse treatment” contrasted with “You can decline treatment.” “Refuse” often carries a negative connotation, a stubbornness, or an implication of someone being irrational or difficult, whereas “decline” tends to convey clear choice—that a rational option has been selected, that someone is doing what is right for them. Nonverbal communication can convey respect, support, and openness, or it can transmit pressure, disagreement, and judgment. Something as basic as standing over a person who is sitting or lying down, instead of sitting or crouching so the two people are at the same eye level, can impact one’s ability to choose. If you’re supporting clients as they work through a decision, offering them an unspoken message of safety through soft eyes, relaxed posture, and thoughtful positioning can make a meaningful difference.
Provide Support
The conscious use of verbal and body language can also help people cope with the emotional distress that can come with making tough choices. It can extend beyond the period of active decision-making into the time when a person’s choice is to be honored. Sometimes a decision that’s right for someone is still very difficult for that person or others to accept. You can apply deep active listening skills and be ready for grief to show up in myriad ways: anger, sadness, relief, resistance. Holding space for emotions and their expressions is a significant way to honor consent.
Evaluate Your Own Relationship With Consent
Circling back to boundaries, in what areas are you adept at ensuring consensual interactions? Where is there room for improvement? Are you vulnerable to asserting your own agenda on certain issues? Are you prone to allowing others to transgress your boundaries, such as when you overgive? How about self-consent? That’s when you honor your own wants, needs, and limits. Do you respect your own time, energy, ethics? Of course it’s good to stretch a little, learn and grow, and not so great to violate one’s own health and values.
When we improve our self-awareness and agility with respect to our own consent, we automatically become better at helping others engage with consent. Ongoing contemplation of the threads of consensual care at end of life makes us individually and collectively healthier.
Resources:
Compassion and Choices: A comprehensive United States resource
Dying With Dignity Canada: Focus on MAiD in Canada
Advance Care Planning Canada: Provides resources and tools for both individuals and care providers in a Canadian context with perspectives transferable to other regions
DMD México: Resources for choices in dying in Mexico
Author Bio:
INELDA Educator Lara Stewart-Panko is passionate about individual, family, and community issues. She feels privileged to be doing work that is so intimate, sacred, and profound. Her greatest joy is connecting with others to bring that much more peace and well-being into the world.