The Language of Cancer a nd Why it Matters to Men with Prostate Cancer

1. The Language of Cancerand Why it Matters to Men with Prostate Cancer Richard Wassersug, PhD August 1, 2019

2. The word string “language of cancer” gets over a million hits in Google! • Clearly many people have thought about this language and have written about it. • There are many words and phrases that one could comment on. • Here Iwill focused on a small selection of terms that have psycho-social implications, and how they are understood can variously help or hurt us. • This is just a small fraction of the terms one could explore about.

3. Here are just a few terms that can be problematic because of how people understand (or misunderstand) them • Cancer • Survivor (diagnosed, treated, cured…or not?) • Fighter, warrior (and the “war” on cancer) • Palliative care, hospice • “Patient & Partner”vs. “Patient & Caregiver” • “Patient-Centered Care”, “Person-Centered Care” vs. “Relationship-Centered Care” • CAM, integrative, holistic and supplements • Patient Representative, Patient Advisor, Patient Advocate • Patient-reported outcomes

4. Cancer • There is no single disease called “cancer”; rather there are many diseases called “cancer” and the are not all equally dangerous. • We too often fail to distinguish dangerous cancers from curable cancers. • By not making this distinction, cancer societies help promote high anxious about all cancers. [High levels of anxiety help them raise money!] • But one could argue that such imprecise taxonomy is unethical. • If the American Cancer Society were more honest, it would be called the American Cancers Society.

5. How do we change the situation? How do we get people to start to use the term “cancers”. • Several authors have blamed healthcare providers for not doing enough to educate patients that not all cancers are the same. • But a case can be made that the problem lies mostly with the media. • We can start with pushing journalists to be more accurate when reporting on famous people diagnosed with or dying of “cancer”.

6. Survivor • Some patients love this term, others hate it. • For some patients surviving is trivial, for others it is a miracle. • For many, the term implies that one is “cured”. • While treatments for some cancers are clustered together. For others, treatments are offered to patients in more serial fashion as the disease progresses. [This is equivalent to the distinction between acute and chronic care.] • Patients, who are treated with intense, multi-modal therapies given over a relatively short time and have no further disease progression, are going to be the ones most likely to accept the label “survivor”. • Breast cancer patients generally like calling themselves survivors. • Prostate cancer patients commonly do not like the term.

7. War, Fighting and Military Metaphors • Common things one hears — • “He lost his fight with cancer.” • “He is determined to fight his cancer.” • There is no evidence that the military metaphor extends life or improves quality of life! • Instead it is associated with fatalism. It is all encompassing and takes away from living one’s life. ________________ Hauser D & R Wassersug Do we need to end the 'war' on cancer? TheGuardian. [Op-Ed article] March 22, 2015.

8. An image used to promote the dog tag campaign in Canada, designed to emphasize a commitment ‘to fight cancer’. The soldier’s facial expression is meant to convey the seriousness of the moment and thus the seriousness of the disease.

9. Images of dog tags from two different prostate cancer dog tag campaigns.

10. Palliative Care, Hospice • Linked to the warrior-mind set; i.e., to accept hospice is seen by those, who believe that cancermustbefought, as surrendering to the enemy. • But we are all mortal and death is unavoidable. Hospice requires accepting mortality…and that is not the same is giving up on life. • Palliation is formally symptom management, including pain management in the absence of a cure. The common drug treatment for prostate cancer is androgen deprivation therapy (ADT). It is technically a palliative treatment yet patients can be on and off it for year. And most patients are not comfortable with calling ADT “palliative care.” • Hospice is even more challenging. • Hospice would be more acceptable, if it came with life goals. [My goals are….]

11. For terminal breast cancer patients… “Patients with longer admissions to hospice (>3 days) reported higher quality of life, and their caregivers were significantly less likely to experience major depressive disorder after their loved one’s death…” ________________________ Accordino MK 2017. Association between survival time with metastatic breast cancer and aggressive end-of-life care. Breast Cancer Res Treat. 166(2): 549–558.

12. “Patient and Caregiver” vs. “Patient and Partner” • To be labeled a “caregiver” is honorable in our society for it demonstrates a willingness to sacrificing oneself for someone else. • But the title “caregiver” can be much more of a burden then a blessing. • Research shows that having a partner improves survival, and thus, patient-partner partnerships should be protected. • The first step to protecting these relationships is to keep the partners as partners, and not let their relationship devolve into a patient-caregiver relationship.

13. Some further points on the concept of caregiver • Ethicists have noted that sex between a patient and a caregiver is potentially unethical because of the uneven power dynamic. Although unstated… • …to label someone the “caregiver” of a cancer patient is thus to imply that their sexual relationship is over. • Because of our mortality, it is admittedly unavoidable that many relationships will end up with a “patient and caregiver” dynamic. • However, we should resist that and avoid the label “caregiver” until it is absolutely necessary; i.e., when the relationship can no longer be a co-supportive partnership.

14. The Need to Keep Partnerships Strong For five major cancers—prostate, breast, colorectal, esophageal, and head/neck cancers—the survival benefit associated with marriage has been reported to be larger than the survival benefit of chemotherapy! Given that fact… ….cancer centers might improve their outcomes by offering a little less chemo and offering instead dating services and marriage counseling. ________________ Aizer AA et al. 2013. Marital status and survival in patients with cancer. Journal of Clinical Oncology 31: 3869-3876.

15. “Patient-Centered Care”, “Person-Centered Care” vs. “Relationship-Centered Care” • These terms are not exactly the same. But does it matter? • It is not clear what the opposite of person-centeredcare is, so it also follows that it is not clear what person-centered care itself is. • At a superficial level, one assumes that patient-centered care or person-centered care involves direct eye contact between the caregiver and the patient rather than for instance, the healthcare provider looking at a computer screen or lab report.

16. The terms patient-centered care and person-centered care are somewhat “gendered”. By that I mean… • Women are better at reading emotion from body language and facial expressions. • Female patients may expect more eye contact and attention to body language then male patients because it carries more meaning for them. • Technological advances in medicine mean more quantitative data for doctors to interpret, and males tend to be more data-oriented. • It would help everyone in the healthcare system if everyone understood the stereotypic areas where men and women are more likely to excel.

17. Person-centered care is about considering the impact of an illness on not just the patients, but on the people around them. However… • Relationship-centered care is a better term. • It implies a working relationship between the patient and the healthcare provider. • The equality associated with this concept can make life better for both patients and their healthcare providers.

18. Alternative vs. Traditional Medicine • Traditional (i.e., allopathic) cancer care continues to improve. • Despite this, alternative medicine is growing in popularity. • This includes homeopathy, naturopathy, herbalists, spiritualists, life coaches, etc. • “On average 51% of cancer patients use CAM.” ____________________ Keene, MR et al. 2019. Complementary and alternative medicine use in cancer: A systematic review. Complementary Therapies in Clinical Practice 35: 33-47. However faith in alternative medicine can lead to poor outcomes for patients with a cancerdiagnosis.

19. “By definition, ‘Alternative Medicine’ has either not been proven to work, or been proven not to work. You know what they call ‘alternative medicine’ that’s been proven to work?— Medicine.” • Tim Minchin, Storm https://www.youtube.com/watch?v=HhGuXCuDb1U

20. CAM • CAM = Complimentary and Alternative Medicine • But the “C” and “A” differ greatly! • Complimentary means in addition to medical treatment. • Alternative means instead of medical treatment. • Thus, the pairing of “C” and “A” together as “CAM” can be misleading and dangerous.

21. The Risks Associated with CAM “Widespread but undisclosed use of CAM has the potential to compromise cancer care.” “Some CAM products can affect bleeding risk or may even compromise the effectiveness of chemotherapy.” Yet…. “20% -77% of cancer patients never disclose CAM use [to the physicians]” _______________________ Gavura S. 2019. CAM and cancer: Who uses CAM, and why? Science-Based Medicine May 16. https://sciencebasedmedicine.org/cam-and-cancer-who-uses-cam-and-why/

22. Holistic Care vs. Evidence-Based • Traditional medicine strives to be “evidence-based”. • Since the alternative therapists cannot establish their treatments are “evidence-based”, they have captured both the terms CAM and Integrative Oncology. • Their counter mantra is that they are “holistic”, offering care for the body, mind, spirit, and soul. However… • Alternative therapists typically claim that they offer “holistic care” but may not have the competency to treat cancer. • In modern evidence-based medicine, no one believes that one person alone has the breadth of skills to do all that the alternative therapists claim. They work instead in multi-disciplinary teams.

23. Integrative Oncology • Integrative oncology is the latest term used by alternative therapists to support their pretense that their therapies are “holistic”. • Integrative oncology can be real, but just because someone claims that they offer it doesn’t mean that it is effective or “holistic”. • Often “Integrative oncology” falls in the realm of alternative medicine, and not allopathic medicine. • Whether it is a useful term depends on who is offering it.

24. Supplements • They are not necessarily accumulatively beneficial. • In fact herbal-based supplements typically have some level of toxicity. • Plants can’t flee their predators, and their best hope to survive is to make their predators sick. • A serious concern is that some patients consider supplements an alternative treatment and, if they take enough, they will not need standard medical treatments. • A common misconception is that supplements are only beneficial, when in fact they can be harmful. • Where does such misinformation come from?

25. One factor may be distrust in modern medicine • Ironically, distrust in medicine may arise from its success. • Sanitation, vaccination, and antibiotics have led to astonishing long life and good health in our society. • This has led to: • Unrealistic expectations of continued goodhealth • Ignorance of our own mortality

26. Why trust a doctor now, if you have been perfectly healthy for sixty years with little medical care? • Patients are understandable upset and angry at the the world (including their doctor), when they are told they have cancer. • Facing that situation, they may… • Blame the healthcare system. • Believe the doctors aren’t doing their job. • And seek alternative treatments.

27. It’s Time to Slam CAM, But “Save the C”! • Legitimate cancer centers could legitimately put up signs saying, “We offer better holistic care than you will ever get from a naturopath”! • Hospitals and legitimate healthcare centers are recapturing the term “holistic” to describe their multi-disciplinary approach…and they should.

28. Patient Representative, Patient Advisor, Patient Advocate • These terms do not necessarily mean the same thing. • Health organizations increasingly include patients with these titles on their boards, panels, ethics committees. • So how should we and they determine who is qualified to be an “advisor”, an “advocate”, or a “representative” for other cancer patients?

29. Some thoughts on how to make people with these titles most effective • Patient representatives should not rely on their experiences alone. • Patient advisors should be able to give both novel and useful advice …and not just their personal opinions. • To say a patient advocate is necessary, is to say that the healthcare system is not good enough at taking care of patients. • Thus, the term is an implicitly aggressive and confrontational. That may undermine the ability of a person with this title to provide the best advice.

30. Patient-reported outcomes (=PROs) From Wikipedia: A patient-reported outcome (PRO) is a health outcome directly reported by a patient who experienced it. It stands in contrast to an outcome reported by someone else, such as a physician or nurse. PRO methods, such as questionnaires, are used in clinical trials or other clinical settings. The use of digitized PROs, or electronic patient-reported outcomes (ePROs), is on the rise in today's health research setting. BUT…. Most patients, when told that there will be PROs, think their opinion will be asked. In practice, PROs most often means filling in a questionnaire online.

31. A finally comment on the language of cancer… Terms like complementary, integrative, holistic, patient-centred, supplements, advocate, care-giver and so on tend to share two properties: 1. If one doesn’t think too deeply about them, on first pass they all sound, good, positive, laudable. 2. At the same time though, they are vague and imprecise. Many are, in fact…. panchrestons.

32. So what’s a Panchreston? A proposed explanation intended to address a complex problem by trying to account for all possible contingencies but typically proving to be too broadly conceived and therefore oversimplified to be of any practical use.—www.Dictionary.com A broadly inclusive and often oversimplified thesis that is intended to cover all possible variations within an area of concern—www.Merriam-Webster.com An explanation that is used in so many different cases that it becomes almost meaningless.—en.wiktionary.org  A (supposed) universal medicine; a panacea.—www.wordnik.com

33. Acknowledgments MDs, who have promoted my interest in cancer care, include (among others) Paul Schellhammer, Paul Abel, Derek Wilke, Larry Goldenberg, and Stacy Elliott. Psychologists, who have willingly collaborated with me, include John Robinson, Lauren Walker, Andrew Mathew, Deborah McLeod, Jamie Palmer-Hague, and Lisa Dawn Hamilton. Students, who have also inspired my interest in the language of cancer and its implications to health, include Erik Wibowo, Lesley Roberts, Chelly Sutherland, Hannah McGillivray, and Vivian Tsang.

34. Thank you richard.wassersug@ubc.ca