WHEN TUMOR IS THE RUMOR AND CANCER IS THE ANSWER—AUTONOMY OF CANCER PATIENTS

http://. https://youtu.be/ovvn2WzyiLs   Hi Dr Ryan here, medical oncologist and this is when tumor is the rumor and cancer is the answer.  I am sure you are familiar with our opening song   from chariots  of fire. A man has a plan and in a day it is crushed…… so it is when you have been told you have cancer ,thoughts of loss of control, soul sucking anxiety, what about your family and the list goes on as it hits  you like a ton of bricks.

in the film he rose above it  …he took control… and so you too will be a hero ………i have seen no exception… no matter how afraid you are, and control is what we are going to talk about today …your attitude when first diagnosed and through your course of therapy.. What works?

 

. We will take our time so feel free to write in your questions or comments at www.w4cs.com and i will try to get to them

 

 

It was quite some time ago when the master chief petty officer bob i told you about in the first show gave me some advice on one of the chapters of the book and then again about one aspect of attitude when diagnosed and thereafter here on the show,,, as well as a special place on the therapeutic web site when tumor is the rumor and cancer is the answer.com. Where the book as you know is available or on amazon

 

trust me you need this…the supreme court said so a long time ago and more than once

 

you need this next topic, autonomy, as part of your repertoire of thinking when suspected of cancer all the way to whatever end.

 

autonomy may come naturally to some but usually not…. We are going to take our time to drive it home as it may go against what you may naturally do or think

 

A show on autonomy… how to achieve being the co captain of the ship as much as possible when diagnosed…. Yes , that seems impossible when everything turns to crap and you are most scared .

 

 

 

 

Autonomy

 

 

 

. … i am here to tell you that all can be fixed especially starting from moment one when you are most scared and feeling out of control….

 

It is something you must do, something you must demand, ……autonomy.

 

Your quality of life and those that love you will increase dramatically, so will your response to therapy because you are more in tune with your disease, your therapy and your options and……. Your physician is on notice as is the whole team that it is a team effort , you are co captain of your ship;;;

 

Autonomy….so what does it mean especially in oncology

 

This is the single most important word and concept the reader of my book or listener to this show must grasp. Philosophically, it refers to the fundamental principle that all humans are independent moral agents with the personal capacity to make moral decisions and act on them. To the largest extent, life is about choice, your choices.

The word derives from the greek autonomia, meaning “self-rule.” In modern days, autonomy most often equates with the phrase, self-determination. Individuals are autonomous when their actions are truly their own without coercion or inappropriate influence.

Sometimes when judges hand down decisions, they really hit the spot. Sometimes their words are not too legalistic and they nail the beauty, power and scope of their decisions in terms most can understand.

Certainly one would think all legal decisions are important. However, one of the core principles in western thought and law, one of the guiding lights of our constitution and absolutely one of the most anchoring truths in both caring for cancer patients and being cared for is patient autonomy.

Often in the show, you will hear me use the expression that the patient is the one with the disease. In the final analysis, after all the health care system can do to make information and access to care available, the final decision of the competent adult is theirs. That is how it should be and physicians, families, and patients must never forget it.

Listen to how beautifully american judges state this. “no right is held more sacred, or is more carefully guarded, by the common law, than the right of every individual to the possession and control of his own person, free from all restraint or interference of others, unless by clear and unquestionable authority of law [union pacific r. Co. Vs. Botsford, 141 u.s. 250 (1891)].

Here is another ruling that clearly distills it down on the issue of medical decision-making. “every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient’s consent commits assault, for which he is liable in damages [schloendorff vs. Society of new york hospital, 105 n.w. 92 (1914)].

Thus, patient autonomy refers to the capability and right of patients to control the course of their own medical treatment and participate in the treatment decision-making process.

Indeed! That is also a core guiding principle repeatedly , you will hear that physicians and their teams must fully inform their patients to the best of their ability and the best of the patients’ ability to understand. Health care providers lead the patient to intelligence. However, it is the patient’s job, once lead, to think. As you will hear repeatedly, the patient is the one with the disease.

Why keep hammering this home? God gave you the gift of choice and the greater gift of sufficient intelligence to make those choices if you are sufficiently informed. That is exactly what i am and the show and the book are attempting to do; inform. That is why this section appears early on.

 

Patients must know the power they rightfully can claim. So empowered , they will be able to transform the pain of anxiety, which is fear of the unknown , into the hero producing powers behind fear which are a god given hard wired set of emotional, physical and intellectual responses that can and do lead us to wise, autonomous personal decisions

Therefore, once one is an autonomous patient, we must inform ourselves about some of the key players and passions and emotions and events as one moves from tumor being the rumor to cancer being the answer that will be dealt with by our personal health care team.

 

 

Lets look a little deeper into autonomy

 

 

So lets review and look at some studies on this and some special circumstances autonomy (ancient greek: αὐτονομία autonomia from αὐτόνομοσ autonomos from αὐτο- auto- “self” and νόμοσ nomos, “law”,

 

Hence when combined it is understood to mean “one who gives oneself one’s own law“) is a concept found in moral, political, and bioethical philosophy.

Within these contexts, it is the capacity of a rational individual to make an informed, un-coerced decision. It has been discovered by scientists that autonomy is human capacity to free will, the center for autonomy is completely independent from circumstance or environment

So what about more specifically in medicine

In a medical context, respect for a patient’s personal autonomy is considered one of many fundamental ethical principles in medicine. However, there are not a lot of scholarly articles about it in the literature athough that is improving with the advent of integrative medicine and the advent of patient centerred care  See comment in PubMed Commons below

The medical practice of patient autonomy and cancer treatment refusals: a patients’ and physicians’ perspective. An article from the netherlands

 basically in summary it says says

The idea that patients should take up an autonomous position in the decision-making process is generally appreciated.

however, what does patient autonomy mean in the case of patients who refuse a recommended oncological treatment has not been investigated. How  to clarify how the concept of patient autonomy can be applied to patients who refuse a recommended oncological treatment.

Focused questions would be : (1) what is meant by patient autonomy, that is . How is this autonomy conceptualised and (2) which factors influence patient autonomy. In depth interviews of 30 cancer patients and 16 physicians were conducted. All patients had refused a recommended oncological treatment.

 

They found that patient autonomy on making decisions was  a comprehensive concept as well as  ‘defining life choices’ as sub-concepts of patient autonomy.

in contrast to what is generally believed, decisions of patients to refuse an oncological treatment do not so much rely on the medical information about disease and treatment options, but are rather inspired by patients’ own experiences or those of close others.

 

 

that is key lets say it again

 

in contrast to what is generally believed, decisions of patients to refuse an oncological treatment do not so much rely on the medical information about disease and treatment options, but are rather inspired by patients’ own experiences or those of close others.

The medical information and the role of the physician do, however, influence patients’ experiences of being free and/or of having a choice. Their results showed that the extent of pressure physicians will exert to persuade the patient to be treated as recommended depends on the medical distinction between a curative and a non-curative treatment goal.again this is key

it seemed in their study that there existed a shift in respecting patient autonomy, which depended on factors like treatment goal. Discussing the respect shift may serve to clarify underlying thoughts and principles in the decision-making process for both physicians and patients

 

As we have been saying,,, autonomy can be defined as the ability of the person to make his or her own decisions.

this faith in autonomy is the central premise of the concept of informed consent and shared decision making.

These are crucial concepts this idea, while considered essential to today’s practice of medicine, was developed in the last 50 years.but not practiced quite as often as it should have according to tom beauchamp and john childress[who?] (in principles of biomedical ethics),

the nuremberg trials detailed accounts of horrifyingly exploitative medical “experiments” which violated the subjects’ physical integrity and personal autonomy. These incidences prompted calls for safeguards in medical research.these were not that long ago

However, autonomy does not only apply in a research context.

Users of the health care system have the right to be treated with respect for their autonomy, instead of being dominated by the power of the physician.

Again crucial through the therapeutic relationship, again the concept of co captain of the ship and a thoughtful dialogue between the client and the physician may lead to better outcomes for the client, as he or she is more of a participant in decision-making. And will have more engagement, more willingness to be comliant to a plan jointly arrived at,,,,,, more conversant with physician and staff,,,, less intimidated and thus better quality of life and more attention to advese effects and probably better survival

The seven elements of informed consent (as defined by beauchamp and childress) include 1 and 2.(competence and voluntariness), 3-5. (disclosure, recommendation, and understanding 6-7. Consent elements (decision and authorization).[11]

Some philosophers consider beauchamp and childress criteria insufficient. They claim that an action can only be considered autonomous unless the patient is able to form value judgements about their reasons for choosing treatment options/

There are many different definitions of autonomy, many of which place the individual in a social context. Such as relational autonomy, which suggests that a person is defined through their relationships with others, and “supported autonomy”[13] which suggests that in specific circumstances it may be necessary to temporarily compromise the autonomy of the person in the short term in order to preserve their autonomy in the long-term.

Other definitions of the autonomy allow no leeway and state the person is a contained and self-sufficient being whose rights should not be compromised under any circumstan ]i lean that way when dealing with a competent patient or if not a competent caretaker aways bowing to the law if it gets involved

In certain unique circumstances government may have the right to temporarily override the right to bodily integrity in order to preserve the life and well-being of the person.

 

such action can be described using the principle of “supported autonomy”,[13] a concept that was developed to describe unique situations in mental health (examples include the forced feeding of a person dying from the eating disorder anorexia nervosa, or the temporary treatment of a person living with a psychotic disorder with antipsychotic medication).

While controversial, the principle of supported autonomy aligns with the role of government to protect the life and liberty of its citizens. But even then there is some deabte…. I fall on the side of government

Despite large scale and improvement in commitment to promoting patient autonomy, public mistrust of medicine in developed countries has remained.[16] some have ascribed this lack of trust to medical institutions and professionals introducing measures that benefit themselves, not the patient.

 

some claim that this focus on autonomy promotion has been at the expense of issues like distribution of healthcare resources and public health. Give that some thought what about third world nations or limited resources

 

How about when the disease approaches a terminal phase perhaps autonomy should have been the guiding principle long before this transpired in case it came to pass and thus avoid ethical quagmires, distressed next of kin and playing god

Medical and social attitudes toward cancer have evolved rapidly during the last 20 years, particularly in north america.1,2 most physicians, most of the time, in most hospitals, accept the ethical proposition that patients are entitled to know their diagnosis.

however, there remains in my experience a significant minority of cases in which patients are never informed that they have cancer or, although informed of the diagnosis, are not informed when disease progresses toward a terminal phase.

Although concealment of diagnosis can certainly occur in cases of other terminal or even nonterminal serious illnesses, it seems to occur more frequently and in more common form with cancer because of the traditional and cultural resonances of dread associated with cancer.

These cases challenge our understanding of and commitment to an ethical physician-patient relationship. In addition, they are observably a significant source of tension between healthcare providers. I hold that there is duty of the physician to inform always

 

As publsihed in jama in 1995 ……what about ethnicity issues .  —korean americans (47%) and mexican americans (65%) were significantly less likely than european americans (87%) and african americans (88%) to believe that a patient should be told the diagnosis of metastatic cancer.

Korean americans (35%) and mexican americans (48%) were less likely than african americans (63%) and european americans (69%) to believe that a patient should be told of a terminal prognosis and less likely to believe that the patient should make decisions about the use of life-supporting technology (28% and 41% vs 60% and 65%)

. Instead, korean americans and mexican americans tended to believe that the family should make decisions about the use of life support. Thus ethnicity was the primary factor related to attitudes toward truth telling and patient decision making.

Korean-american and mexican-american subjects are more likely to hold a family-centered model of medical decision making rather than the patient autonomy model favored by most of the african-american and european-american subjects. This finding suggests that physicians should ask their patients if they wish to receive information and make decisions or if they prefer that their families handle such matters.(jama. 1995;274:820-825)

 

In summary i have found as have others

The ideal of shared decision making between physician and patient, has not been adequately confronted. It really is not that tough  despite the face of uncertainty about the patient’s prognosis and the best course of treatment,

Physicians should not but do revert to a model of nondisclosure and nondiscussion, thus closing off opportunities for shared decision making. Or co captain of the ship

A more than 100 year old decision by the highest court of the law. Made it clear we are not md’s magnificent demagogues.

Of course what studies there are show that physicians find it more difficult to adhere to norms of disclosure in situations where there is substantial uncertainty.but the answer is simple talk,,,  too often, relating back to both the god complex and the oath to do no harm

It varies by physician. They may be concerned that acknowledging their own uncertainty will undermine patient trust and create additional confusion and anxiety for the patient.

I believe it does the opposite. It makes tham more human and humane and draws them closer and some physicians either do not get it or fear it

i am on the side of those  who argue  in contrast, that effective disclosure will protect patient trust in the long run and that patients can manage information about uncertainty.they are not idiots

Yes, in situations where there is substantial uncertainty, extra vigilance is required to ensure that patients are given the tools and information they need to participate in cooperative decision making about their care. But give them the tools and co captain the ship

 

Bottom line

 

You, the patient, are the co captain of the ship. You have a responsibility to know the sails, the keel, the rudder the rigging, the set of the sails, the heading the trials, the mindset of the oncologist and consultants ,,,,,

You are a co expert on you

it is your body

No your are not an md but you are a md a on your person in a large sense with your own personal doctorate, not just another case or person with a disease

 

Think of it.

you make autonomous decisions everyday, where and how you live, what you buy, a new car a mortgage, planning for you or your childrens future,

we are wired with free will and its exercise is manifested in autonomy, not arrogance and  not idiocy,,,autonomy.

Just like in school,,, the more you know the smarter you get and you progress and the less the anxiety…and it is infectious to those around you

believe it or not most physicians in oncology love the the appropriately autonomous patient , they are partners with you when there are no right decisions as well as when there is . They can unburden themselves and you from the sense of playing god and being the only one in the know which will happen naturally because of their superior training often enough

I would refuse to take care of a patient who would not take care of and for themselves, who would not listen who would not teach and engage their caretaker, they will hurt themselves and the whole team

Once again, no they are not the oncologist although some are amazing in the knowledge they aquire

but rarely are they so intellectually challenged that they can not grasp major decisions and make them together with their doctor ,,,

In that regard i had one horrific case of a daughter petrified of her mother so much she could not make up her own mind the mother called all the shots and the daughter had breast cancer, she died- the details do not matter now- the patient would not co captain the ship and to this day it haunts me , i swore it would never happen again ,

caretakers are consultants but not the patient

they are invaluable but not the patient

they are loving but not the patient

 

This is your liife and your are dying to live not living to die….

Act like it

If your oncologist has a sceptre and throne on everything either make them abicate all authority or find another one,,,,,

I feel that stringly   you see when you are a cocaptain to the linit of your intellectual skills you will learn more

You will kill that soul sucking sense of loss of control that will drive you mad

You will be more in touch with your signs and symptoms

You will actually trust yurself more and your doctor,

Your will handle therapy better and not surrender yourself into hands you do not know ,

Again, your are not the md but they are not the magnificent demagogue

….. Make them explain everything until you get it to your limit of understanding and it will build on itself, your understanbding that is… and your anxiety will diminish

Your team has a plan they all know and are pulling your ship of state all with the same oars in the same direction your engagement in your disease will make you never have to say or hardly ever say     what if

 

Dying to live not living to die…..   Autonomy