How does anyone define what’s valuable to them in life, our children, our partners, our homes, special jewellery like wedding rings, memories, travel, cars or Money? When you become a stage 4 patient many aspects of your life change and so do your priorities I was asked to give a presentation at this years MPNE conference in Brussels on what I felt was value to a stage 4 patient, our whole weekend was spent assesing what value means to different stakeholders in healthcare by that I mean the Patients, Physicians, Regulators, Health Technology Assesment (HTA), Pharma. What we can access as treatment always has a value placed on it by these various stakeholders and affects us all as patients we hear about how medications are too expensive the country can’t possibly afford it. Who decides this and how? and are they doing it right, can whats value be made into a mathematical formula as someone suggested to me (unlikely). That is the question we were trying to answer and in the end it is always going to be something we disagree on because everyone has a different understanding of what is value to them personally or in their professional capacity, but and this is the crux of the matter if we are not accessing what is value properly with input from all stakeholders it is the patient the person at the end of the process but who should be the focus from the begining of it, that suffers because these opinions on value are used to assess what we the patient can access in terms of treatment and support. Below I have posted my presentation from the conference pls feel free to comment and join in this very important debate
For everyone who hasn’t met me before my name is Kay Curtin and I am a Stage 4 patient from Ireland. I was originally diagnosed as stage 2A in 2004. At that point I was offered to take part in an adjuvant trial or continue with observation. I chose to take part in the trial as the option of observation only filled me with fear. I had three very young children and could not believe that this disease would not return without anything other than surgery to prevent it. It seemed like too much of a chance to take, I needed to be there for my family. The trial was to study the efficacy of a new vaccine called Ganglioside. I ended up on the drug arm of the trial much to my delight my gamble, I thought had paid off, I was very naive and didn’t understand much about how trials worked and didn’t ask much at the time either. I felt at the time this had to be better than just being observed waiting to see what would happen. Over the course of the next two years I received a serious of injections all doses bar the final one. When I returned to the clinic for that dose, I was told the trial had been withdrawn because it wasn’t proven to be effective. What I wasn’t told was probably more important the trial had been stopped because patients on the drug arm were showing more incidence of progression than the observation arm and it was felt that the trial may in fact be detrimental to the patients not beneficial. Was their value in me having that information at the time? Our information is often drip-fed to us by our healthcare teams; shouldn’t the patient always be given the option of deciding how much they are told instead of information being censored on their behalf?
Value can be hard to Quantify
Value to a patient can be something that is very hard to quantify if I went around this room and asked each of you what your opinions on it are we would get a varied response, from patients, medical staff and carers who are present. When I started out on my trial I felt at the time I was getting better value than those who were being observed only, as it turned out I was an ill-informed patient. I have since learned the value of information when you are making a decision on your treatment. At the time if truth be told, I just wanted my oncologist to tell me that this wasn’t coming back, but I now know after 12.5 years and having met many oncologists over the last two years, fortune-telling isn’t one of the specialist subjects they train in however much the patient may wish they did. It is up to the patient to understand the value of information and where to find good factual based sources to help them in the process.
Is patient “Centric” just a buzz word?
Patients and physician can have a very different outlook on what is valuable: some patients may be happy to be passengers in their treatment and sit back and let the physician decide which path should be followed and this should always be the patient’s personal choice. Others may wish to be in the driving seat, and should be supported when they want to be heard, they will want their opinion to be valued by their care team, they may want to educate themselves so they can make informed suggestions and decisions based on what they have learned from other sources other than the physician, this is a new and emerging way of patient/physician interaction and is not without its difficulties on both sides. It is important to remember it is always the patient who has the most on the line and has the most to lose in any treatment decisions taken or not taken, so their input is of enormous value, they are the ones who must decide how much risk they are willing to take, what they are willing to put themselves through in the pursuit of wellness and what they consider a good enough quality of life. This will differ from patient to patient and it must never be assumed what a patient will want in terms of treatment they must always be asked and offered all options even ones that aren’t available where they are being treated.
Are my needs being met?
I am sure many of you will have heard of Maslow’s hierarchy of need. He designed a pyramid that illustrates the needs of human beings from their most basic to just survive right up to achieving I guess the kind of self fulfillment we all dream about bringing us peace and happiness in our lives. I am going to try to use it to explain the needs of stage 4 patients, and what that patient might value in their care. This is my thoughts but I have taken some guidance from a paper by Robert J Zalenski and Richard Rapsa in the Journal of Palliative Medicine called a Framework for achieving Human Potential in Hospice care, my interpretation however is very much about living well at stage 4.
At the bottom level of the triangle is the most basic of needs for the patient this is the need to manage pain anywhere it is causing problems. If a patient is in pain physiological functions such as eating, sleeping, even moving about may be affected. Patients suffering chronic pain may believe it is better not to carry on living, so the value of good pain management is paramount.
The second level of the pyramid looks safety in a personal and social sense. When safety concerns are not met fear can take over your life and make your day-to-day living a nightmare. Fears about treatment, Scanxiety, feeling physically vulnerable, fears about financial implication of illness, how your family are coping, fears concerning death and how that will happen all leads to anxiety and disturbed thoughts. This affects routines and sleep patterns all these need to be addressed by your care team. Professional and also family support is immensely valuable to the patient, reassurance around what will happen in the future, what your options are, how you will be cared for can help the patient to live in a more contented and peaceful state of mind.
Level 3 is about loving/belonging a stage 4 diagnosis is devastating, it can affect your ability to give and receive affection, this can happen even in patients who had previously happy loving relationships. Patients and partners may find it difficult to communicate and turn to different ways of blocking out their mental anguish about the diagnosis. Alcohol can become a crutch; some partners may find it impossible to deal with the situation and even walk away unable to cope with their own feelings on the possibility of taking on the role of carer. Worry about feeling pain when being intimate, or feeling sexually unattractive are very real and can e very limiting for the patient especially if they have had a surgery they feel is disfiguring. They may have gained weight have effects such as acne, rash, hair loss. A patient needs to feel secure so they can reveal their thoughts and feelings; intimacy can be described as the experience to being your true self so ideally having the space to be yourself is vitally valuable and can have a positive, calming and healing effect on the patient. But also those who are supporting you find value in support; they also need to have a safe space to offload their concerns.
The fourth level is Esteem this can affect the patient’s ability to participate or not in activities with family and friends, not being able to engage socially might lead to doubts about your ability to continue to enjoy life, it can lead to a sense of isolation and make you withdraw into a smaller circle of dependence. Physical restrictions might result in un-employment, or not being able to drive any longer, this loss of independence, and sense of value and worth in society, being cut off from what’s accepted to be normal every day activities adding further to the devastating unwanted side effects of a stage 4 melanoma diagnosis. Trying to find a new sense of normal is hard to adjust to and for patients who are living longer term with a stage 4 diagnosis it is something that can be a real struggle, feeling ok having a good quality of life not but not being able to plan for a still very uncertain future can leave you living in a sort of no-man’s land between life and death. It’s bloody brilliant to still be here but it’s not the live you envisaged for yourself and will need to be readjusted depending on your changing health status. Support from family, friends, specialist cancer support centers, ease of access to medical, psychological and financial supports, but also connection with patients experiencing similar diagnosis offer tremendous support valuable in this situation to the patient. You want as normal a life as possible without melanoma being its sole focus; it’s a difficult balance to achieve at times.
According to Maslow unless the first four levels of the pyramid are met it may be very difficult to reach the top or final level successfully. A patient may not have time to address all their needs in accepting their mortality like putting their affairs in order, finding closure on life events they need to deal with to find peace, creating a legacy maybe through work, writing or film, travelling, revisiting places of importance, experiencing life goals, spending quality time with family, but even as in living there is no right or wrong way to achieve the end goals. The importance should be on the patient coming to terms with the diagnosis, living the time they have in a way that’s meaningful and true to them. Having a sense of control over decisions in their healthcare, not having unnecessary obstacles put in their way, living a good quality of life for as long as possible. Having the support to express ones fears, and help in coming to terms with their fear. Knowing that they are valued as a patient, a member of society and loved by family and friends can all contribute to the patients well-being and but also ease of passage whenever the time comes as it does for everyone in life eventually.
What is valuable to me as a patient
Support: for me physical, psychological, face to face online
Information/treatment choice: I want to know what’s available and what everyone else can avail of without barriers being put in my way
Having my opinion valued: I want whoever is treating me to listen to my needs
Access: I don’t want to have to fight for what I need I want to concentrate on my living my life as well as I can I am sick I don’t need the added stress
Family support: I want my families support needs to be addressed
Living with Purpose: I want to contribute to my family and society in a meaningful way for as long as possible
Support: I need support for all these needs to be met
Stage 4 is more than a statistic
Stage 4 patients aren’t sitting at home waiting to die, you can meet us anywhere, we still see value in our lives and we should not be considered a burden to society: value us give us the chance we deserve to live longer, and stronger. We might be sitting next to you on at work or on the train, having fun in the garden next door with our kids like Lucy, Running next to you like Kacie, jumping out of a plane over your head like Luc, or climbing amazingly high mountains like Fredrik or hiking to the most western point in Europe like me, we are busy doing not waiting. That’s a life lesson for everyone not just melanoma patients. We all want our existence to be valued in this world, and none more so than a stage 4 patient who is feeling vulnerable about their health and their future chances of survival. We are more than just statistics on a Kaplan Meir graph or a number on a hospital chart. There is value in our lives our knowledge our presence we are not just melanoma and we are do not want to be defined by it!!