Quality of life and shared responsibility

Summary of quality of life and shared responsibility

A documented gap:

A questionnaire survey among cancer patients supports a widespread experience: There is a significant gap between the healthcare system’s standardized treatment pathways and the individual’s desire for participation, sufficient information, and a focus on quality of life. Nearly half have opted out of or considered opting out of parts of the recommended treatment, primarily due to fear of side effects.

The system’s inherent barriers:

The current approach in the healthcare system has inherent barriers that hinder more individualized treatment. There is a tendency to deprioritize well-documented, non-medical interventions such as exercise, and a one-sided focus on survival statistics often overshadows the patient’s personal values and desire for quality of life.

Building a bridge:

The article is a call for a paradigm shift. From a system that treats diagnoses to a real partnership that respects the individual. The way forward involves strengthened dialogue, recognition of an integrative approach, and a culture where shared responsibility is the foundation of treatment.

The gap between system and individual

For many, a cancer diagnosis starts with a sense of loss of control. Management is handed over to a healthcare system built around efficiency, guidelines, and cancer pathways. The goal is to ensure everyone receives the best-documented treatment. But in this standardized approach, a gap inevitably arises – a distance between the system’s protocols and the individual’s unique life situation, fears, and personal values.

What carries the most weight? A statistical improvement in five-year survival of a few percentage points, or the preservation of quality of life here and now?

Especially for people who have already lived a long life, or for those who fear the consequences of aggressive treatment, this choice is not a given. When the system’s offerings do not align with one’s own convictions, one is left in a dilemma, having to either accept a treatment they are uncomfortable with or take full responsibility for finding another path.

Experience in figures

This gap is not just a feeling. A questionnaire survey titled: Choice of cancer treatment, conducted in 2025 among 177 cancer patients, paints a clear picture of widespread frustration and a desire for a different approach. [14, 16]

A widespread desire for a different path

The survey shows that 39% have fully or partially opted out of the recommended conventional treatment. A further 9% have considered it but did not dare to take the step. For 65.5% of those who opted out, the primary reason is a well-founded fear of side effects and ruined quality of life.

The experience of pressure and lack of information

Almost half (48.8%) have experienced some form of pressure to follow the standard treatment. At the same time, over 40% do not feel sufficiently informed to make a real choice. One respondent expresses it this way: “I would have said no to radiation if I had to do it over. Did not get enough information about side effects at all … They downplayed the radiation totally!”

A closed door for dialogue

Many cancer patients want to take an active part in their process by including diet, supplements, or other complementary methods. Nevertheless, only 19.3% experience the system as genuinely supportive. Almost a quarter (22.7%) meet a directly judgmental attitude.

Another respondent says: “Alternative treatment – even supplements – has been a complete taboo with the doctors I have met.”

These experiences show that many are not just passive recipients, but active and critical players who demand a dialogue that the system is often not geared for.

The system’s inherent barriers

The problem is rarely ill will on the part of the individual doctor, but rather a system with built-in barriers that favor certain types of treatment and information.

Narrow view of evidence

The system weights evidence from large, pharmaceutical studies highest. This creates a barrier for, for example, effective, non-patentable treatments.

A striking example is the CHALLENGE study from 2025, which showed that a targeted exercise program for colon cancer patients who had surgery could significantly improve survival – on par with expensive medicine. Nevertheless, such an effort struggles to be implemented because it is neither a pill nor a machine and therefore “falls between two stools.” [1]

Surrogate endpoints over quality of life

A significant portion of new cancer drugs are approved based on so-called surrogate endpoints, such as a tumor shrinking for a period.

A large analysis in the journal JAMA Oncology has previously pointed out that only about one-third of new cancer drugs tested in final phases can actually document that patients live longer or have a meaningfully better quality of life. This raises a critical question as to whether the treatment benefits the patient or just the statistics. [2]

Underestimating the patient’s role

Research clearly shows that when patients are actively involved in decisions about their treatment – a process called shared decision-making – their satisfaction increases, and they are more likely to follow the chosen plan.

Nevertheless, the experiences from the study strangely show that this form of partnership is often missing, and that the conversation primarily concerns informing about a predetermined protocol. [4]

Psychological importance of control

Psychological research into the sense of control shows that people who feel they have some control over their life situation cope better with crises such as serious illness.

Whereas, when the healthcare system unintentionally reduces the individual to a passive recipient, there is a risk of undermining this important psychological resource, which can affect both mental well-being and potentially also the physical process. [5]

Digital information bias

In a time when many seek knowledge online, it is a serious barrier that digital tools can have an inherent slant. A test of the A.I. service Gemini showed that when asked about complementary treatment, it primarily referred to official sources that directly warn against the approaches, and systematically excluded recognized, independent information sites. This reinforces the system’s existing bias and makes it decidedly difficult to find nuanced information. [11]

Taking shared responsibility

Taking shared responsibility is not about turning your back on the conventional system, but about insisting on your right to be an equal partner in your own process. It is about making an informed choice that is right for you, based on a balance of all factors: statistics, risks, quality of life, and personal values.

Preparation:

Familiarize yourself with your diagnosis and ask the doctor critical questions. What is the real, personal benefit of the treatment? What are the most common late effects? For they are far from always trivial.

Use your right:

By law, you have the right to informed consent, which includes the right to say no – but which, by its very nature, necessitates that you are properly and correctly informed.

Ask for time to reflect, and preferably bring a companion to all important conversations.

Seek knowledge and community:

Find reliable sources of information and talk to others in the same situation. Communities can provide invaluable support. From here, experiences are typically shared that can further supplement the doctor’s information.

Find your standpoint:

Based on the knowledge you gather, you must assess what is needed for you to feel most secure and best ensure a dignified life ahead.
For some, it is to gratefully accept the entire conventional package.
For others, it requires a more holistic and complementary approach.

Your decision:

Be aware that no matter what your conclusion may be, it is a choice. And you must make it. And it must feel right, so that you additionally get the full benefit of the placebo effect.

Building a bridge

To bridge the gap between the cancer patient and the system, changes are required on several levels:

To politicians, hospitals, and patient associations

Recognize and fund:

Well-documented, non-medical interventions such as exercise and dietary guidance as an integrated part of cancer treatment. Create interest in and support independent research into complementary methods and repurposed drugs. [18]

Create an open culture:

Ensure curiosity and knowledge sharing in hospitals, where dialogue on integrative and complementary initiatives should be a natural part of the conversation.
Train healthcare professionals in the subject and allocate the necessary time for difficult conversations about doubt, fear, and quality of life.
Collect precious information about what individual patients supplement their treatment with, why, and the subjective and objective effects of these measures. Learn from departments, such as Vejle Hospital, that already practice a patient-centered approach. [8]

Be a stronger voice:

Recognize patients’ desire to be viewed as a whole that must function as one, and not as parts to be patched in isolation. [6, 15, 16]
Take up the challenge and listen to the members who call for a more open approach. Patient associations – including, not least, the Danish Cancer Society, which has the necessary financial muscle – should push for more research into integrative and complementary treatments. Not least repurposed drugs. [6]
Patient associations should act as a critical counterweight to the system, rather than primarily being an echo of its official guidelines. It is evident that this is what their members, the patients, want.

It is – and should be possible:

That an open dialogue about complementary methods is possible can be seen in departments like the Cancer Department at Vejle Hospital. Here, a culture has been created where patients’ wishes are heard, reflecting a widespread need. Just as the patient is met with a folder: “Do you take supplements? – That is perfectly fine with us.” [8, 17]

A major report from Trygfonden, “The Healthcare System According to the Danes,” has previously shown that nearly eight out of ten Danes want to be able to talk to their doctor about alternative options. Is it not time they were heard? [6]

Conclusion

The journey through cancer is deeply personal. The desire to be met with respect, responsiveness, and recognition is universal.

The experiences gathered here point to an acute need to move away from a standard model and toward a genuine partnership between the cancer patient and the healthcare system. Because ultimately, the goal is not only to prolong life, but to ensure that the life lived is characterized by dignity, meaning, and quality. A life that is not just lived, but is worth living.

Read also the Op-ed: There is a gap between the system and the patient: Is it about surviving or about having quality of life? in Jyllands-Posten (Jyllands-Posten, 2025) (Danish Language)

Appendix: Questionnaire survey

Data originates, in part, from the aforementioned online questionnaire survey conducted in May 2025. A total of 177 people with a cancer diagnosis completed the questionnaire, which was distributed via social media and the information site.

The survey is fully anonymous. It is acknowledged that this distribution method can (and likely will) lead to selection bias. The results should therefore not be viewed as statistically representative of all Danish cancer patients, but as a strong indication of the challenges experienced by a significant group.

See all data from the Questionnaire Survey

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