Written by Megan Tkacy
Reviewed for Medical Accuracy by Jake Prigoff
After a loved one is diagnosed with cancer, you’re probably expecting them to say: “I want to fight.” But what if they don’t? What if they choose to deny treatment and live out their remaining days on their own terms? Whether they’re a relative, partner, or close friend, watching someone you love turn down treatment is anything but easy. As a matter of fact, it’s downright devastating. As their caregiver or support system member, however, it’s paramount to respect and accept their decision.
So how do you get to a place of acceptance? Well, each person’s journey is unique, but these five strategies could be helpful in one’s approach to this difficult challenge.
1. Get It All Out
It might seem counterintuitive but if you disagree with their decision to deny treatment, you won’t want to keep that information to yourself. Why?
According to Hilary Jacobs Hendel’s article in Time Magazine, Ignoring Your Emotions Is Bad for Your Health, “Thwarting emotions is not good for mental or physical health. It’s like pressing on the gas and brakes of your car at the same time, creating an internal pressure cooker.” She explains that when we bottle up our emotions, it may lay the groundwork for depression, headaches, heart disease and insomnia — among other issues.
Secondly, it’s difficult to effectively support someone when you’re emotionally charged. Getting out your emotions can be therapeutic for you and your loved one, but it’s helpful to be mindful with your approach. It’s normal to be upset about their decision, but you don’t want to take out your emotions on them. They’re already being emotionally and physically tested to an immeasurable degree, and the last thing they need or want is an onslaught of your anger.
“Certainly, I wouldn’t say to yell at each other, but if you try and stifle your feelings, they will come out in other ways,” explains Lisa Losch, RN, a case manager at Hospice Alliance in Kenosha, Wisconsin. “If you have the kind of relationship that you can share your feelings, I don't think it’s bad at all to say, ‘I'm angry that you chose this path, but I still love you and will support what you have chosen to do. I want you to know that I'm having trouble with it.’”
The key here, as Losch explains, is to have these conversations in a manner that's not going to upset you or your loved one. This approach will depend on how you two typically communicate. For example:
- If you always relay “hard news” via written letters or notes, you might want to use this approach again.
- If you always speak candidly and openly with one another, you might want to express your feelings during a conversation.
Say what’s bothering you, but don’t shame them or challenge their decision. The goal of getting it all out is to gain understanding so you can move forward and better support them — not make them feel worse.
Talking it out can also help you accept the situation. Charlie Hansen, a certified grief and loss counselor and chaplain for Hospice Alliance in Kenosha, Wisconsin, encourages families to share their thoughts regarding a loved one’s decision to deny treatment. “If the child is upset that Dad won't fight or Dad is upset that the wife won't fight, I try to bring them together and let them explain their feelings to one another so that it’s not the focus, so that it’s not the elephant in the room,” he explains. “They start to understand the reasoning why, and they come to this mutual understanding. Neither one likes the decision that the other one is making, but they accept it.”
While emotional, these conversations may also strengthen the relationship between you and your loved one. “I've seen people grow closer together. Their love just kind of becomes even stronger because they actually end up supporting each other,” Hansen continues. “When they come together like this, the caregiver comes to an acceptance and the patient to an understanding. Then, they can talk about the end, which the patient really needs to talk about.”
It can be helpful to make these discussions completely open. Let them talk about their fears and plans for their service. “A lot of times, the caregiver doesn't want to hear this. They’ll outright say, ‘I don't wanna talk about your death. I don't wanna talk about your funeral,’” he explains. “But when they come to that agreement together and acknowledge each other's feelings, it's extremely healthy.”
2. Get Help From an Outside Party
None of us get out of this thing called life alive; yet, talking about death is rarely second nature for us. That’s why it can be worthwhile to bring in an outside party for discussions about denying treatment. Whether it’s a friend or a medical professional, an objective third party can help you express your feelings without going off the rails.
Sarah Ramidani, M.D., a primary care physician at Froedtert South in Kenosha, Wisconsin, says it can be helpful to bring doctors into these conversations. “In a neutral environment, it can sometimes be good to broach that subject and at least ask questions. You can say to the doctor, ‘Well, what if they did this?’” she begins. “If you're already thinking about these things but are scared to say them to your loved one, then say them to the doctor. This can open up the conversation.”
Ramidani emphasizes that there’s nothing wrong with putting a physician in the moderator position. “If the person you’re caring for has made up their mind to not do treatment, it can be helpful to have the doctor as the facilitator of the conversation. It's important to ask questions, to have all the options presented to you so you’re at least aware of them. It makes accepting their decision a little bit easier.”
You might also want to talk to a therapist who specializes in cancer topics. To find one in your area, you can start by perusing the listings provided by Psychology Today. “As far as therapy, I don't say go see a therapist or counselor,” Hansen admits, but he encourages caregivers to participate in support groups. Whether they’re hosted online or in-person, these can help you process your feelings and, in turn, have more effective conversations with your loved one.
“You gotta talk to somebody, and it's gotta be somebody you trust. Sometimes, you want to talk to somebody who doesn't have a dog in the fight, somebody who’s removed from the situation, so they don't come in with preconceived notions of what should, could or might happen,” he adds. “It needs to be somebody you can say anything to; you can tell them your worst secret and all they're going to do is still love you — that's the person you want.”
Hearing from others who are — or who have been — in your shoes can also help you come to terms with your loved one’s decision. Confiding in others is also an excellent, and extremely important, aspect of self-care. “I always use the analogy: A car won't run without gas. A caregiver can not give care when they're empty,” Hansen begins. “Self-care for a caregiver is extremely hard because they have a tendency to feel guilty if they go and do something for themselves, but they need to have somebody that will support them.”
3. Get Spiritual But Not Religious
It’s true: None of us know for sure what happens when we die. When you put your faith behind a potential fate, however, it can take away some of the fear surrounding death and allow you to actually talk about it. These conversations can go a long way as you learn to accept your loved one’s decision to deny treatment.
“If you've never been with someone who’s passed away, it can be scary. It probably makes you think about your own mortality,” Losch begins. “I feel like anybody can be spiritual and feel like there’s a higher power and a heaven, someplace wonderful where we go after we die. I think believing in something can be helpful as you wrestle with your own feelings about your mortality.”
She explains that getting spiritual might not make you completely OK with death, but it can help you to not project your fears onto your loved one. This is huge because although you’re scared for them, they’re scared too. You don’t want them to die, and they probably don’t want to die either. But they’ve made their decision and you must support them in it, not add to their fear. When you search deep within yourself and start believing in what could happen, you can begin to comfort your loved one and let go of any anger, resentment or disagreement you have regarding their decision. It allows you to just be there for them, which is what they need more than anything.
“As we're dying, we need to think, believe or hope that there's something outside of what we're facing. I think it brings peace to the caregivers if they believe that too,” Hansen says. “I think spirituality, that looks totally different for everybody, and that's part of the role of a chaplain: to join them, not to lead them in a different direction, and help them with whatever it is that they believe.”
In Philip Pullman’s “His Dark Materials” trilogy, people who pass away end up becoming one with the universe again; their souls become the soil for new life. In the Bible, everyone who believes in God and repents for their sins goes to heaven. Whether you believe in these concepts or something else entirely, it’s worthwhile to believe in something so you talk with your loved one about death.
4. Get Answers for Yourself
Often, with knowledge comes assurance and closure. If you’re not sure what you believe regarding death, talking with someone might be helpful, whether it’s a chaplain, therapist, spiritual figure or just someone you trust. Gaining information on the illness itself can also help you accept the situation. For this, Ramidani encourages doing your own research and asking as many questions as you need to.
She cautions using the internet as your sole source of information, as it’s easy to go down a rabbit hole with searches and land on biased information, given all of Google’s algorithms. There is value in Facebook groups and other online groups catered toward caregivers, Ramidani says. Not only do these provide an opportunity to learn from other people’s experiences, but they also allow you to ask questions specific to your situation.
“The best source of information is going with your loved one to their appointments, hearing the information directly from the doctors and being able to ask questions,” she emphasizes. It’s good to bring questions to these appointments, Ramidani adds, but these conversations can also serve as a starting point for your research. “After you get that information from the doctor, then you may have a more targeted approach to what you're looking up.”
Losch also empowers caregivers to get answers for themselves. In regard to internet searches, she points to the American Cancer Society and Mayo Clinic as some of the better resources for cancer treatment information. “At the beginning of the diagnosis, it's probably helpful to talk to the oncologist or somebody on the oncology team about what the odds are. If treatment was selected, it’s beneficial to know what the course of treatment would’ve been and any possible side effects,” she says. To get the most out of these conversations, you might want to ask the doctor:
- How many rounds of treatment would it have taken?
- How would they have felt after each treatment?
- How would the treatments have affected their quality of life?
- How much time, if any, would the treatments have added to their life?
“I believe this would be helpful information to know so you can better understand why the patient chose not to choose treatment at that point,” Losch adds.
Hospice Alliance arms all families with a comprehensive, color-coded binder of information. It’s loaded with patient-specific guidance as well as information for caregivers, including answers to frequently asked questions, self-care tips and safety best practices. It’s helpful for caregivers to peruse the patient sections, too, so they can be prepared and understand what their loved one might be experiencing in regards to symptoms, medications and beyond.
“We try to have everything in that binder that might come up so caregivers and patients feel more comfortable. Like, oh yeah, this is how you give morphine or these are the signs that somebody is getting closer to dying,” Losch begins. “It's a good resource to get you prepared and help you feel less off-guard when situations arise. But I also encourage people to call us any time. There’s always a nurse available, and no question is stupid.”
Knowing what your loved one is up against is an excellent way to put yourself in their shoes and build empathy. To that end, it can also help you understand what their mindset was when they chose to forgo treatment. There’s a good chance that they made the decision based on the stage of the illness or slim odds that treatment would work. Going online and seeing the common progression of the cancer can be helpful, Hansen explains, but it’s important to remember that no two situations are exactly alike. The more effective way to begin understanding and accepting their decision is by talking to them, and perhaps their doctor too, and asking them why they chose this course of action.
“A lot of times, patients tell me they want the quality of life versus quantity because they know treatment is going to make them sick and it's gonna give them, what, three months in bed while they throw up all over themselves?” Hansen says. “It's kind of a selfish thing for us, who aren't going through it, to fight their decision just because we don't wanna lose them. No matter what decision was made, there’s always an end date. It's important to know and try to understand what the person who’s sick is going through … to better understand why they chose what they chose to do.”
It’s not easy to accept a loved one’s decision to deny treatment because, as Hansen says, you don’t want to lose them. But perspective can help pave the way to acceptance. If you’re having difficulty seeing the situation through their eyes, you might want to ask your loved one more questions. Keep in mind, this will likely be difficult for them to discuss, so don’t push the issue if you or they start to get upset. Some of these questions could include:
- Why don’t you want to undergo treatment?
- What would happen to you if you received treatment?
- What will happen to you now?
Seek to listen and understand rather than judge or dispute their decision. Hopefully, through these conversations, you can begin to accept their decision, understand what lies ahead and determine how to best support them. Talking about this can also help you make the most of each remaining moment.
5. Get In The Moment
Whether your loved one was given weeks or months to live, it’s important to celebrate every good day as if it’s their last. It sounds cliche, but getting in the moment can help you empathize with them on a deeper level and start to forget why you were aggravated, upset or disappointed in their decision to deny treatment.
“I think living in the moment is critical because you don't know what's going to change, even overnight. Trying to have as much quality time with your loved one, while you're able to, is very important,” says Ramidani. “Knowing that time is of the essence, it might help you put aside some anger and frustration, and you can show that person the love and affection you still feel for them without having those other emotions cloud your experience.”
She reiterates that you’ll never truly know how much time your loved one has left. One day, they might feel up to a night on the town; another day, they might only be able to rest in bed. Seeing their health decline is admittedly one of the most difficult aspects of being a caregiver, but it forces you to understand the severity of what’s happening and make the most of every moment. It also helps you put everything into perspective: As they get worse, it no longer matters what their decision was; what matters is what you do with the time they have left.
“I always tell caregivers to enjoy this moment, because there’ll be a time when they’re not gonna be talking to you anymore. There’ll be a time when they’re not gonna get out of bed or eat. And you don't wanna focus on that; you wanna focus on right here right now, when they turn their head, look at you and say, ‘I love you,’” Hansen explains.
What’s the best way to live in the moment? By embracing every second and doing what they want to do. If they’re feeling well enough to play cards, play cards with them. If they’re hungry and craving McDonalds, get them McDonalds. If they want to get out of bed and visit their favorite store, take them there. You can also ask them what their bucket list items are and try to check some off together. They won’t be well enough to climb Mount Everest, of course, but you can still make each day special by helping them accomplish some of their goals. These might include:
- Taking a day trip to a place they’ve wanted to visit.
- Trying new foods or restaurants they’ve been curious about.
- Experimenting with fashions they’ve been intimidated by.
- Watching films they’ve been wanting to see.
- Reading books aloud that they’ve been meaning to get to.
“And you can talk about things they’ve done and what they want you to do when they’re gone,” Hansen adds. “It's going to be hard, but it's critical to just enjoy the moment because you’re not always going to have this time. If you can be in the moment and that means you cry together, that's OK; Cry together because it's sad and it's gonna hurt. What's really, really important is that you're open and honest with each other."
If there’s one thing you should do while your loved one is still around, it’s to try and accept their decision to deny treatment. It can help you make the most of your limited time together and free you from any anger, resentment or other negative thoughts you might be harboring. It can also help you love and respect them on a deeper level than ever before. Getting there isn’t easy, but these tips can help you work toward acceptance and, ultimately, get to a better place when caring for someone with cancer.