18th September 2019

Can ‘good patients’ be empowered patients?

Whether you opt for conventional or alternative cancer treatment.

When we are ill, we can be at our most vulnerable. We may want to be a good patient and not rock the boat, for fear of annoying those we depend on. Yet we also may want to feel empowered to do what we think is best. 

Treatment choices, like some illnesses, can be complicated. Everyone has a view and it’s hard enough to decide. How to cope with peer, medical and family pressure?

I have been there, many times. Since my first diagnosis of breast cancer and especially since my second diagnosis.

Cancer treatment choices are complex without a 100% guarantee of success. With so many variables, views, recommendations, statistics, warnings, different health systems and also unethical practices the whole area can be stressful and certainly divisive.

And when our life or the quality of our remaining life depends on it, then making cancer treatment choices can be an excruciatingly daunting position to be in.

Exercising our right to treatment choices can be frightening, exhausting, can lead to arguments and make us feel isolated and alone.

More often than not, there is little coordination, overlap, understanding or respect between the different systems or approaches – like conventional and alternative cancer treatments and the criss-crossing in between.

Please note: This article focuses on the emotional strain of making cancer treatment choices. I do not argue against or in favour of any particular approach.

While we may be on a never ending path of self questioning and worries whether we are doing “the right thing”, others may question, dismiss and criticise us, too.

1. Cancer treatment choices – where do we start?

The basic starting position is the diagnosis and (if you get it) the prognosis: what cancer, how serious, curable, treatable, how long to live…

Depending on where you live your health care system may offer a range of choices for free, or not, or for a contribution. You may have to self-fund outright or depend on insurance cover. You may have to borrow, beg or do fund raising.

What cancer treatment choices may be on offer to others may not help you, because of the nature of your particular cancer diagnosis.

2. Which treatment choice is right for you?

That’s the 1 Million Dollar question. There are no guarantees. How much time do we have to appraise all that there is? Recommended treatment plans can even differ between consultants and hospitals. Can and should you get a second opinion?

What about alternative or complementary cancer treatments? How can you tell the useful from the harmful? Many dismiss this route outright.

It is difficult to find someone with sufficient and unbiased knowledge of what is available, able to compare and to make a recommendation suitable for your individual circumstances. And let’s not forget, those circumstances can change – rapidly.

Your (conventional) medical team may be duty-bound not to comment on other treatment options. You may be frightened of discussing it with them for fear of appearing like a “difficult and uncooperative” patient. You are afraid of being laughed at, dismissed or even discharged.

Equally, you may not want to offend by requesting another opinion or combining one approach with another.

You may feel pressurised by people around you to opt for one or the other.

Others may freely share their views with you, to the extent that it becomes an unhelpful information overload.

You may have no-one to help you through it all, and you are seeking help.

Or you may just want to be left alone to figure it out.

And then there are so many variations in between. Nothing is clear-cut.

In all of this you may feel like you have a time bomb ticking inside of you. And you think you have only one chance “to get this right”.

3. Cancer treatment side effects

You may have heard of what side effects can happen, and you may have experienced them. People will give you advice and sometimes suggest what to do.

Weighing up the risks of potentially increasing health complications and ultimately death from cancer with the health risks of cancer treatment choices seems to be straight forward to many. A common assumption is “Surely, you do what it takes to stay alive!”

Then again, if you have been seriously affected by the side effects of some cancer treatments, then you know how desperate things can get and how tempting it can become to refuse or switch treatment.

Stopping chemotherapy – the taboo we don’t talk about – Read More

4. Doing as we are told

Going along with it all is hard enough, especially if the illness is making us feel very ill indeed (which is not always a given). You want to trust your medical advisors. You want someone to take you by the hand, protect you, decide and do what is best for you.

Those around us (family and friends) may also be happy, if someone else takes charge. It’s there job right? And you don’t want to offend or fall out with them.

5. Who can we trust?

With cancer and other medical treatments it feels like we put our lives in the hands of others. When we don’t feel comfortable or safe in the hands of the other, than this is a stressful and frightening prospect.

On what basis can we tell whether the practitioner (conventional, alternative or complimentary) is trustworthy, or whether the most effective treatment plan has been chosen?

If you opt for conventional treatment that is self or insurance funded, not everything that you think you need may be covered. You may end up sitting between two medical systems.

Similarly, if you opt for alternative or complimentary cancer treatment and you develop un/related health issues, whose responsibility is it to take care of those? Or more to the point, is your practitioner qualified to do so? What is the back up plan?

6. Being a responsible or difficult patient?

On the one hand we are encouraged to make informed choices. Depending on your circumstances and where you live in the world, that may be even more essential, when the existing health care system may not be up to doing it for you.

I am all for playing an active part in our health care and cancer treatment choices. Yet I also know from personal experience how difficult and near impossible this can be, when we are seriously ill and have neither the mental nor physical capacity to research and ask questions.

Refusing specific medical treatment, interventions or drugs can be a difficult decision to take. It is an area full of unspoken taboos and apparent contradictions. And there can be so many scenarios why we may be inclined to refuse:

  • Concern over side effects: The side effects of treatment can be so overwhelming and felt so deeply, that this can be more powerful a reason to stop, than the actual illness it is hoping to address.
  • The cancer is said to be incurable: We may opt to spend the rest of our remaining life without treatment, that may make us unwell.

Whatever choices we make, neither risks nor success are guaranteed. We have to decide how much of this uncertainty we are ready to bear. And that is stressful, for us and those around us.

7. Feeling guilt for the cancer treatment choices we make.

If any of the above applies to you, then you may feel you are the only one. Because it is not something that is talked about much.

You may work very hard at weighing up your own interests over the feelings of others.

It is hard to refuse cancer treatment, which others may not be able to get unless they pay for it, or for whom that particular kind of treatment (no longer) works.

Others may have advocated hard for such cancer treatments to be available. Is our refusal disrespectful of their hard and often selfless work?

It is hard to consider refusing treatment, when you are told the consequences could be life shortening. You may well be at peace with that, but your family or friends may not share you view. You might worry about letting them down. They might not understand and respond with anger and disappointment.

When we are ill, we are extra sensitive to the power of others, especially those we depend on for our basic needs. And those who depend on us for their needs. How to square all that?

8. If you make alternative or complementary cancer treatment choices.

Some people make such choices instead of or in addition to main stream cancer treatment.

Alternative and complimentary cancer treatment choices can be a mine field. You may not want to discuss much with others, for fear of prejudices regards your views.

You may not feel comfortable with the regular assumption that cancer patients looking towards alternative cancer treatment options, are the victims of scrupulous individuals who are abusing the vulnerability of others.

And for sure, they exist. But what about patients who make informed choices?

9. The mental and emotional cost of making cancer treatment choices.

Whatever you choose, there is probably no single day that will pass, without you wondering whether you have made the “right” choice. Regardless of treatment, there is no guarantee.

Finding you own path can often be done by trial and error or by coincidence. It might be a reflection of your character or your circumstances. Doing it your own way is a process.

Having others question or even fight you over what you choose to do, or not, that is hard.

You need to settle on a communication approach that works for you.

Decide on who needs to know what. Try not to be apologetic, defend or convert. It is your life, your illness and your death.

10. What about me?

Regular readers will know, that my articles regularly refer to my own experiences.

Following the local recurrence of my breast cancer in May 2018, I was getting ready for a mastectomy. For (what turned out to be unfounded) health concerns, the operation was cancelled at short notice. By the time it was due to be rescheduled I had changed my mind. To the utter dismay of those around me.

I opted for another approach. And I will leave it as vague as that, because as a psychotherapist and writer I feel I have an extra responsibility of not wanting to unduly influence the choices others need to make for themselves.

When I discussed my choices with a surgeon recently they advised:

Do whatever it takes for you to sleep well at night. Cancer is all about risk management.

As I am publishing this post, end Feb 2019, I feel well and have returned to work. But I need to live in line with the fact that currently I live with cancer.

Photo via Pixabay.

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