I recently had the opportunity to talk to a group of medical professionals about lung cancer survivorship issues, and a major focus of my talk was telling them what I think lung cancer patients want from our medical teams. I think that it is an important message to deliver because my medical team looks like a pretty healthy group of individuals overall, and I often wonder how many doctors and nurses work with seriously ill patients without ever having experienced serious illness themselves. It’s hard to know what you will want until that day comes when you are the person sitting in a chair while your doctor gives you a grim diagnosis.
The first thing that we want is hope, especially on the day that we get the bad news that we have lung cancer. Even the most ill of us need a glimmer of hope. We are individual cases, not statistics, and no one can predict exactly how our disease will progress. We need our doctors and nurses to believe that about us, too. I think this is one place where many of the doctors who are delivering the news may not be fully prepared. I learned I had lung cancer from my family doctor, and he knows little about the disease. He did the best he could, but I left his office feeling terrified and lost.
If we are having a difficult time dealing with fear and anxiety, we want help for these debilitating mental states. Whether it is referral to a counselor or a prescription for Xanax, we deserve understanding and assistance. This is no time to try to tough it out! Some of us may never raise the question, so it would be helpful if our doctors and nurses would ask us from time to time how we are doing emotionally, and whether we could use some help.
We want to learn enough about our diseases to meet our particular needs and no more. Some of us want to dig into the science as deeply as possible, and some of us prefer to take things one treatment at a time, and don’t want to become lung cancer experts. Our medical team needs to meet us where we are and point us towards appropriate and trustworthy resources that match our level of curiosity. They also need to answer our questions, be they as simple as what the comfort drugs given with our chemo will do for us, or as complicated as a discussion of a particular research paper.
We want our doctors’ offices, clinics, support groups, and hospitals to be safe places where we will not have to deal with stigma and shame for having a disease that is often assumed to be the result of personal choices. Whether a lung cancer patient smoked or not, we all deserve treatment to control symptoms and extend our lives. We all deserve compassion and kindness along with our treatments.
I’ve come to believe that what we want most of all is to connect with other lung cancer patients. Look at everyone on this site - that is exactly what we are here for. Our doctors and nurses are vital to our continued survival, but other lung cancer patients and survivors know exactly what we are going through and can be much more helpful with the nitty gritty of how to deal with side effects. Confidentiality rules make it difficult for doctors to introduce us to each other, but it seems like the best place to make connections would be our clinics and treatment centers. Thank goodness so many of us use the Internet to come together, share information, and support each other. Can you imagine how isolated we would be without this wonderful resource?
Is there something that you want from your medical team that I have not mentioned here?
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It does make your diagnosis seem a little better if the person giving it to you don't sound like they are reciting it from a book and looking at the floor.
I want my doctors to be honest and at the same time accept when I decide enough is too much and not immediately drop me on my butt. I may want to say enough is enough after 15 years, but that doesn't mean my medical needs instantly stop.
Yes! Fortunately my family doctor is also the medical director for our local Hospice and palliative care organization, and we talk all the time about the issue of deciding when enough is enough. He will take care of me when the time comes.
Thanks for this excellent summary. I believe the most important thing is hope. Unfortunately what we constantly hear from DRs are statistics, which are by the way very outdated since we have now cutting edge technologies and treatments. You are absolutely right. We are not statistics! And we don't have an expiry date either! My husband has been given a prognoses of a few month short after he's been diagnosed - actually straight after he's been out from surgery. Really dreadful! And that's been almost 1.5 ago!
People need hope, something positive. What I have learnt along the way, - I have been researching non stop - that DRs have very little knowledge about the new treatments. I'm talking about immunotherapies - keytruda / opdivo and there are a few others.
So what we want from DRs is to stop with this nonsense statistics and expiry dates and instead being on the top of the very latest treatments. Having said that it would also be extremely important that DRs would push the GOV to get these horribly expensive drug on the PBS, should be fully covered my medicare! At the moment it cost 60K / year for SCLC in Australia and that's with the patient access program.
Also what we want is to get DRs to understand that medical cannabis does help for a lot of cancer sufferers so stop acting like there were some criminals! It's already approved in some parts of AU, but supply is still a huge problem.
Support groups should be a must in every hospital!
Great incite! You nailed it! I would suggest that doctors watch an old movie called The Doctor. It's about a heart surgeon who acquires throat cancer, and deals with a patient perspective himself. William Hurt is the doctor and the movie is excellent!
I'm a surgical RN, and I cringe every time I need surgery- knowing just a little too much...
Wonderfully put, Anita. For me, communication is key as well. This is my life and I want an active role in my treatment decisions. That requires that I take responsibility and become well educated in what is possible within all arenas. Thank you for being a strong voice.
Anita, I certainly hope your audience heard you. Professionally and personally I have dealt with physicians and medical teams for years and you are right - communication is key. Listening to the patient, respecting that patient and their loved ones, giving information so that the patient can reach their goals and make their own decisions is crucial. Working with a patient, not dictating, is really at the heart of it all. We are here to take care of one another, what else is there?
Anita, you have opened up a very important dialogue here. Thank you. I have insisted that my doctors and their teams work with me not on me. So far that has worked well, but does challenge my oncologist. He's used to his patients just accepting what he says. I want him to think outside the box. I think we understand each other and so far work well together. May this continue.
Thank you for all the work you do on behalf of all of us.
I cant grumble with the medics that treat my husband but I do agree that the gps and consultants have not got huge amount of knowledge or if they do they don't share this unless you lead on it. I agree the lack of support services and linking of patients and supporters is terrible. I felt the first few months feeling so isolated as well as shocked frightened and my husband who doesn't connect in these sights must feel at times alone ( although he reads my posts). The delivery of the treatment plan and prognosis is now a blur but I agree a leaflet is not ok to discuss options is not ok. However their interventions plus our positivity and healthy food and exercise so far is all helping. Thank you for opening this debate. Much love to all those posting. Tracey
I've connected with my pulmonologist and she is extremely accessible and honest and emotionally supportive. She has a thoracic oncology (non medical) assistant I can email or call anytime. She schedules my scans and gets the approvals from insurance. I trust them. This is what I want and need right now.
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