The Caring Corner®
The Caring Corner – Challenge of End-of-Life Decisions
It’s a challenging time when someone we love is nearing the end of life. It’s hard enough to say anything, let alone have meaningful conversations about medical treatments. Patients often experience pain and those around them—family members — struggle to digest what is going on, understand the options and reach some level of agreement. Sadly, poor decisions made at these times can lead to a reduced quality of life for those who are very ill. Decisions need to reflect individuals’ values and are tempered by prior experiences.
Some end-of-life researchers have focused on how such conversations and the resulting decision-making process that takes place between medical professionals, patients and loved ones affect outcomes. Prior to death, it’s helpful if older adults make decisions about reducing or ending treatment. The challenge, though, is the nature of the conversation. It’s a lot more that just having the doctor propose a pill or suggest a different procedure. It is driven by the interaction between the physician and the patient.
Researchers have found that it is preferable for the physician to first invite the patient and loved ones to relate their points of view before treatment options are discussed. When a doctor discusses medical options first, the dialogue tends to gravitate toward treatment details. Those listening are almost always less knowledgeable than the doctor, so the conversation becomes lopsided and may not provide a chance for those affected to share their values and feelings.
One leading investigator has concluded that the best conversations dealing with end-of-life decisions begin with the patient’s perspectives and those of her loved ones, with questions used to elicit responses. Doctors could ask if the family has discussed various treatment options, possible complications or what is most important to them regarding quality of life. It is also helpful to inquire about past healthcare experiences, as well as personality of the person receiving care.
Investigators have discovered that families have these types of discussion more frequently than medical staff might assume. A doctor might inquire if the patient and family have has conversations about end-of-life matters and the answer is, “No”. Then, the medical professional will probe. She might inquire if they had older family members who have gone through something similar; the response will often be, “Oh yes. We dealt with this with my grandmother. She had cancer and was in hospice for two months before she passed. We had a detailed discussion at that time.” When family members and the patient have more context, and when they have opportunity to respond to an open-ended question, the process will elicit a sharing of values and important life decisions. This is helpful to the physician. A benefit of this tactic is that it lets the healthcare professional suggest a course of action based on what they’ve learned about the patient and the family. This sets the stage for better, more effective decision-making.
When Someone Has Dementia
The process develops additional wrinkles when the patient has dementia. People with dementia represent a growing healthcare demographic. By mid-century, more than 40 percent of deaths of older adults will be among people suffering with dementia, and nine out of ten hospital patients with later-stage dementia experience suffering before they pass. Dementia is not a single disease, but a general term for a drop in cognitive ability substantial enough to prevent someone from enjoying life normally. While there are many types of dementia, the most prevalent is Alzheimer’s Disease, which accounts for as many as 80 percent of all cases. The second most common form of dementia is vascular dementia, which takes place in one’s brain after a stroke.
When the patient has dementia, the nature of communication changes. Commonly, dementia impairs the areas of memory, communication and language, the ability to focus and pay attention, and our capabilities of reasoning and judgment. In this case, families must play a more active role in making choices. In a perfect world, the patient with cognitive decline already has in place advance directives that clarify his or her wishes. Without this guidance, either in writing or clearly discussed, loved ones must make decisions based on what they believe the patient would desire.
Decisions made at the end of life need to mirror the value of the individual while preserving comfort and dignity. An individual with dementia has the legal right to decline healthcare intervention. Such desires are typically communicated through the use of an advance directive, a legal document that details the medical care he or she desires once unable to make decisions.
Advance directives must be put in place when the patient still has legal capacity, which is a degree of cognition and judgment required to enter into legal arrangements and make important medical decisions. The advance directive should be formalized as soon as possible after one has been diagnosed with dementia. Ideally, it will be part of everyone’s personal planning.
Medical professionals who are discussing end-of-life options ideally will ask about advance directives as part of the conversation. “What are your mother’s desires for medical treatment at this stage of her life? What do you believe her wishes to be?” Again, by leading with open-ended questions, the physician can trigger a more valuable discussion that incorporates feelings and values vs. leading with a discussion of medical options.
On the other side of the conversation, family members should feel free to ask the doctor and themselves anything that helps them understand their options.
- What does this treatment do and how does it help?
- What are the risks or chances that the treatment will cause pain and discomfort?
- Is mom in pain? What can be done to provide comfort?
- Does this treatment match what mom would have wanted?
- Are we doing everything possible to preserve her dignity?
- Does this treatment give mom the best quality of life?
When more than one family member is involved, disagreements may occur. Family members should participate openly making decisions on behalf of their loved one. Some might become angry and disagree about a treatment option. Some family members may refuse to participate because they believe the family is “planning for death.” While these are deeply personal conversations, the medical professional can help. A social worker, counselor, doctor or nurse can facilitate conversations, again by encouraging conversation that elicits values and feelings.
