Knowing when to stop treatment for an incurable disease is an agonizing decision. It leaves many patients and loved ones feeling hopeless and lonely. But you don’t have to face this decision alone. There are tools and people ready to help you decide when to stop, start, and continue treatment.
Knowing when to stop treatment is an agonizing decision, but people and tools stand ready to help you decide what to do next.
Curative treatment isn’t always healing. It can increase suffering.
Studies say your most powerful tool for knowing when to end treatment is honest discussions with your loved ones and healthcare team.
Asking yourself, your family, and your medical team honest questions helps you gather information, clarify your values and goals, and choose the right treatment for you.
Up to 50% of cancer patients receive chemotherapy within four weeks of their death. Many of these patients are too weak, sick, and painful to leave the hospital, despite the fact most wanted to die comfortably at home, not in a hospital bed.
Offering disease-targeted treatment, also called curative treatment, when a patient is near the end of life can increase suffering. The treatment may rob them of what they really wanted – time to do what they love with whom they love. Rather than traveling, spending time with grandchildren, or pursuing cherished hobbies, they may find themselves back in the emergency department or even the ICU.
Certainly, the right treatment at the right time can lengthen your life and keep you active when living with a serious illness like cancer, dementia, or lung disease. But as your illness progresses, there is also a chance that treatment will stop making you feel better and start making you feel weaker and sicker.
With continual advances in medical technology, it can be tough to know when you reach that point. Healthcare professionals say early and frank discussions with your family and medical team is the most powerful tool for knowing when to stop treatment.
Honest discussions are your best tool
Thorough discussions with your care team clarify what you want. It helps your doctors and loved ones know how to support you and which treatments to recommend.
A support team often includes trusted loved ones, a disease specialist, a palliative care physician, nurses, social workers, and spiritual advisors. Having such a team helps you gather information, ask hard questions, and gain insight from people who care about you.
Studies say frank team discussions are as good as – and sometimes better – than the objective methods doctors use to project your disease outlook. Such prognostic tools are helpful for an objective view but are not as good as the humans supporting you. Instead, collaboration can lengthen your life, improve your symptoms, and reduce anxiety and depression for both you and your loved ones.
Leonard Barry, a cancer care researcher, says, “The best health care outcomes – and the greatest healing – arise from that collaboration.”
A palliative care doctor is another powerful tool
Palliative care physicians are experts in helping people face incurable illnesses at every disease stage. They work with your disease specialist to manage symptoms and make treatment decisions. Consulting with a palliative care specialist can help you decide when the time is right to end disease-focused treatment and consider comfort measures only.
Leading palliative specialist Dr. Steven Pantilat states in his book Life After the Diagnosis that most end-of-life patients who stop curative treatments wish they had stopped sooner. Surprisingly, patients with a palliative care expert on their healthcare team live better for longer.
How to talk with your support team
When you face the decision to stop treatment, the most important factor is what you want. You are the expert on your body, values, and goals.
Yet, you may not feel like the expert when facing stressful and often urgent treatment decisions. Clear discussions with your loved ones and healthcare team can help you confidently gather information and uncover your values and goals of care, which will guide you through very difficult decisions.
Refining your values
To know if it’s time to stop treatment, it's essential to realize what is most important to you in life and treatment.
If you need help clarifying your values, ask yourself these questions.
- What is most important to me now?
- What gives my life meaning?
- What spiritual or cultural values and traditions can help guide me?
- What are my hopes and dreams for my loved ones?
- What makes a good life?
Your answers will not only guide your decisions, but they will also help your team guide you.
Clarifying your goals
Talking about what is most important can help you set realistic goals. When facing serious illness, treatment should support big picture goals about the meaning and quality of your life.
These questions help you and your loved ones set achievable goals.
- What does quality of life mean to me?
- What is most important in my life to give it quality and meaning?
- What would make me feel like I no longer have a good quality of life?
- Is it most important to attempt all treatment even if it makes me too sick and tired to be at home with family?
- Do I want treatment if the risk is high that I will require a machine to stay alive?
- Do I want my pain managed to the point I am not awake to engage with loved ones?
- Is there anything in my life still missing or undone? Will treatment keep me from pursuing these things?
- What legacy do I want to leave? Does treatment support this?
Setting meaningful goals helps you decide if treatment will help achieve those goals. More treatment can make you too weak and sick to meet your priorities.
Pantilat warns, “Chasing promises of being cured from clinic to clinic and undergoing risky treatments that won’t help you achieve your goal can break your spirit, your health, your heart, and your bankroll. It can also devastate those who love you.”
Asking tough questions and gathering information
To gather information, boldly ask your healthcare team tough questions. Also, as best as you can, investigate the treatments offered or ask a loved one to probe into them for you.
Hard questions like these help your doctors answer honestly.
- How is my disease responding to my current treatment?
- What if this next treatment doesn’t work?
- What do studies and statistics say about the success rate of this treatment?
- What do studies and statistics say about the risks of this treatment?
- What do you think will happen to my health if I stop treatment?
- What happens when my disease progresses to where I can no longer live how I want to?
- If I stop disease-focused treatment, what comfort treatments are available to maintain my best quality of life?
- What is it like to die of this illness?
Once you gather the best information you can, trust your gut, says Pantilat. Make your decision and move forward. Use your valuable time and energy to meet your goals rather than question your decision. If later you receive encouraging news about your condition or a new treatment, you can change your mind and restart disease therapy.
Talking about an incurable disease takes courage, but discussing it makes patients feel better. When you’re ready to stop curative treatment, it doesn’t mean your team and loved ones abandon you. It means you shift your focus from aggressive disease treatment to aggressive comfort treatment so you can have the quality of life you want.
As Pantilat says, “Treasure your time and spend as much of it as you can doing what you love with those you love – do it while you can.”