Featured Voice: The Biggest Gift You Can Give to Your Loved Ones When You are Diagnosed with Cancer
As a palliative care physician, I see a lot of very sick patients dealing with serious diseases, such as cancer, heart failure, and dementia. If my patients are able to express themselves, our time together is spent having difficult conversations about what the plan for their care should be moving forward. While this is tough it is also good in the sense that patients can make a decision by themselves. What is more challenging is that, when patients cannot express themselves, those decisions fall to their family members.
As physicians, we are supposed to encourage family members to consider what their loved one would do in a particular situation, but often families offer responses such as, “we never had a conversation about this” or “I have no idea what my dad would do”. In medicine, it is extremely difficult—at times almost impossible—to make a decision not to do something (not to intubate, not to start dialysis, not to start tube feeding, etc.) and often treatments are continued on ailing patients despite being no longer beneficial. If a patient’s wishes for end of life care are not known, it creates a problem both for them and their family. Families who have to make a decision without clear guidance often struggle—both during treatment and after a patient passes away—in wondering if they did the right thing. On the other hand, families that know their loved one’s wishes can make decisions with greater peace of mind.
This is why it is so important to talk beforehand about the “what if’s”, which we call advance care planning (ACP).
Many patients find the topic extremely difficult to confront and discuss, but ignoring ACP leaves their families with a greater challenge down the road. Making a life-or-death decision for someone else is incredibly difficult and can cause longterm—even life-long—psychological stress. ACP removes the “what ifs” and lessens the psychological difficulty families experience during end of life care.
It’s my belief that sharing your goals and values through ACP is the biggest gift you can give your family.
A Better Approach to ACP
A very common misconception of ACP is that you have to decide on treatment preferences. This is not true. All medical interventions carry different implications in different clinical settings and it is impossible to cover all possible circumstances with one decision. Deciding treatment preferences in the future is similar to deciding what you will eat for dinner a year from today. You can’t. Even if you do, what you want to eat on that day will likely change depending on a variety of circumstances.
Focusing on treatment preferences as an approach to ACP is unecessarily challenging and can be overwhelming. In its place, I would like to propose a better approach for how patients or their family members can initate a conversation about ACP. In this approach, rather than focusing on treatments, we focus on values and priorities in order to make these difficult conversations easier and provide the pateint with the care they desire.
Initiating the conversation
Patients and family members alike say they struggle to start ACP conversations. The easiest way to begin is by normalizing the topic. Find a way to do so with openings like these.
A. “I wanted to have a conversation with you. Is that ok?”
B. “I heard that [x] had a cancer diagnosis recently.”
C. “I recently read the article about advanced care planning”.
Keep things positive
Often, people try to start ACP conversations by quickly moving into topics that can be scary to think about. Often, these topics are difficult to discuss because they are negative. Nobody wants to talk about negative things. It is better to start on a positive note that still drives toward the answers family members need to fulfill a pateints’ wishes for treatment. Depending on if you are a patient or a family member initiating this conversation, start with statements or questions like these.
A. “The aspects of my life I really enjoy right now are...” / “What do you enjoy most about day to day life?”
B. “I think I need [xyz] for life to feel meaningful for me.” / “What makes your life meaningful?”
Transition from positive to negative
Even after you’ve talked about the positives, it is still challenging to move on to negative topics. Utilizing a transition like the one below can be helpful.
A. “Of course, we all hope for the best and want [answers to question 2] to continue, but it’s also important to plan for the worst.”
Talk about possible negative situations in the future
These questions start to direct thoughts towards the negatives, but if you’d done good preparation with questions 1-3, it becomes less difficult to share these thoughts. Here is one example of how a patient or family member could steer the conversation towards the negatives.
A. “If things get worse, what concerns me the most is making sure I still have...” / “If things get worse, what would you be most concerned about?”
The key question: “Is there any condition you would find unacceptable?
This is the most important question. It might be difficult to understand for some people, in which case, using some examples (i.e., becoming bedbound, losing cognition) might help. Some physicians also rephrase this with “what is the fate worse than death?” or “is there any line in the sand?”. If you are able to answer this question, that is the golden response that needs to be shared with your family. If this feels uncomfortable to talk about, or you’re unsure of your answer, you should still talk a lot about questions 1-4.
A Reminder to Patients
As a patient, what is important to remember about the conversation above is that there is no need to mention treatment options. You don’t have to decide on treatments, but you should talk to your family about values and priorities.
As time goes by, values and priorities will change, and that is ok. That is the exact reason why you should start talking now and talk regularly. Remember, this is the biggest gift you can give to your loved ones. They might not realize how valuable this conversation is and they might not want to talk about it now, but if and when the time comes they will understand and be grateful.
We never say never in medicine, but there is one exception. It’s never too early to start this conversation. Start talking now, and give your family that gift.