Clinical trials are an important link to developing new therapies which extend lives and give patients hope. At Cancer Treatment Centers of America at Midwestern (MRMC) our Clinical Research Department participates in phase II and III testing. This testing evaluates the efficacy of new therapies and also compares new therapies to the current standards of care. Currently at MRMC there are 31 open studies with 22 patients enrolled. Members of the clinical research team include a regulatory affairs specialist, a statistician and two new study coordinators. Dr. Bruce Steinert and Dr. Eugene Ahn are directors. Theresa Minniear, MSN, RN, OCN along with Anjanette Sorensen, BSN, RN represent nursing in the Clinical Research Department. According to Theresa, the nursing role in the research department involves patient teaching, study drug administration and data entry. Not all patients fare equally in clinical studies due to individualized responses, therefore patient outcomes and side effects are monitored meticulously by nursing. Theresa reports that all current standards of care - medications and procedures were once clinical trials, "I enjoy working in research because I can be part of a potential new therapy before it ever goes to market. It's exciting to witness a therapeutic outcome that's ahead of its time!"
The following link has some great information about clinical studies. Please read the imbedded link in the fourth paragraph - stories about patients who have participated in clinical trials. These patient testimonials completely changed my mindset about clinical trials. Clinical Trials
Questions
- How would you respond to a patient who is curious about clinical trials?
- Are there any ethical concerns about using placebos in clinical trials?
Discussion Question
Lisa Bonchek Adams was a prolific writer who passed away from metastatic breast cancer March 6, 2015. Lisa had a world wide audience and wrote about her experiences living with cancer as well as dealing with grief and loss. In keeping with Lisa's wish, her website continues to be maintained to educate and enlighten others about the cancer experience.
As a new oncology nurse I made a comment about weight loss to a patient I had not seen in several weeks. As I know now, weight loss for me would be great - for a cancer patient it can signal progression and trigger worry. I still shake my head back and forth when I remember this. For this month's discussion please add your own thoughts about positive or negative communication with cancer patients. It is not necessary to respond to other people's comments, it is important that you make your comments on the Journal Club blog site and not Lisa's! Stupid Things That People Say to People With Cancer
Please send the answers to the two questions to melissa.luebbe@ctca-hope.com .
Lisa Bonchek Adams was a prolific writer who passed away from metastatic breast cancer March 6, 2015. Lisa had a world wide audience and wrote about her experiences living with cancer as well as dealing with grief and loss. In keeping with Lisa's wish, her website continues to be maintained to educate and enlighten others about the cancer experience.
As a new oncology nurse I made a comment about weight loss to a patient I had not seen in several weeks. As I know now, weight loss for me would be great - for a cancer patient it can signal progression and trigger worry. I still shake my head back and forth when I remember this. For this month's discussion please add your own thoughts about positive or negative communication with cancer patients. It is not necessary to respond to other people's comments, it is important that you make your comments on the Journal Club blog site and not Lisa's! Stupid Things That People Say to People With Cancer
Please send the answers to the two questions to melissa.luebbe@ctca-hope.com .
Communication with cancer patients can be tricky at times. You want to make sure to say the correct thing because if you do not you could cause additional worry or stress to the patient. It also becomes difficult if a patient approaches you about a scan for instance and the results have not be given to the patient yet. For example, I had a patient with neuro changes and the Med Onc ordered a MRI of the brain. It showed brain mets and Med Onc wanted patient to sim for brain radiation, (they were currently receiving radiation to another site). No one told the patient of the results but a sim was added to his schedule. He was also scheduled to see Dr. Chang prior to the sim. The patient had seen his own schedule update the new sim that was scheduled but had no idea what for. He came to me trying to ask questions and I in a way had to play dumb to the results because in no way was that my place to give that patient their results. It was really hard to keep a straight face and do that and it was also hard to face him after he finally got the results from Dr. Chang because then I knew he was aware that I knew what was going on the whole time and kept the information from him.
ReplyDeleteI have also had difficulty with the end of life conversations that can occur from time to time with patients and their families. I kind of clam up and don’t know what to say. I try to put myself in that situation and think about what I would want to hear if I were talking to someone else about that difficult topic. Nothing can make it better at that moment… But again sometimes silence is the best response.
When the medical oncologist and the patient decide to go to hospice, the atmosphere of the visit changes drastically. As the clinic nurse, our role requires us to start and end the clinic visit. When patinet''s go to hospice, you can't say, "See you next time" or "Take care" when wrapping up the visit. Instead, I find myself engaging more with the patient, reflecting on their past treatments and their decision to stop treatment. I've learned that sometimes the best thing to say is nothing. Just being present and supporting the patient's decision is a great way to show the patient you care.
ReplyDeleteVery well said Brit! I agree :) In the above situation, there is nothing you can possibly say that will lighten the mood or make the patient feel better. Saying nothing, but being present can mean the world!
DeleteIt's a very saddening place to be when they go to hospice. While I haven't been on that side, I have had conversations with patients that find they have no quality of life and may want to stop treatment. They seem so relieved to know that we are there to support their decisions.
DeleteNonverbal communication can be a very effect way to let a patient know you are there for them. Just sitting in the exam room in silence with a patient, holding a hand, rubbing a back, or a supportive embrace can let your patient know that you are on their side and available for them. Many times patients need someone, who is not a family member or friend, to be a sounding board for thoughts, fears, frustations, and sadness. By just being with them or listening to them, with some patients, is simply enough.
ReplyDeleteRecently, while conversing with a patient during a clinic procedure, he verbalized some distress regarding the financial burden cancer treatment has caused. He has always had a positive outlook and is a very vibrant gentleman. "I'm fighting to live today, but if I go tomorrow, all my struggles and concerns will end," he said in relation to the life insurance policy he holds. He laughed as he walked out of my room and before I had a chance to say anything. What can you posibly say in response to that? Looking back, I dont know that I woul've been able to find the right words to address his comment. Quite honestly, I dont think he cared to hear what I head to say at that precise moment. Instead, I believe he was looking for someone to listen, someone other than his family/loved ones! In nursing, sometimes the best thing you can do is listen. Actions speak louder than words! In our case, it's merely our presence and genuine desire to listen that can matter most :)
ReplyDeleteThis comment has been removed by the author.
DeleteI tend to shape my responses/words supporting a patient according to what I think that a patient needs at that time without patronizing or misleading or misrepresenting. Sometimes the best response is no response and listening with an open heart.
ReplyDeleteI agree with you Mary, i think sometimes that is just what we need to do to listen to them and to let them know that you are always there for them.
DeleteAgreed.
Deletesince i started working here I become more aware of being careful about my words because our patients have to deal with a lot of things , physically , emotionally, spiritually, financially and every little thing matters. i tried my very best to become a more of a listener than a talker. Words are not enough sometime to let them know you care, I gave them hugs and hold there hands to let them know that im here whenever they need me.
ReplyDeleteThere are often never the right things to say in situations because we have not gone through what they are experiencing. Although some patients like the advice, a majority of them love the fact that they're receiving the attention of a caring healthcare professional. It says a lot when a person can sit there and listen to an individual vent; it shows that they really care. It is very difficult as a health care professional to have to hear heart-breaking events that happen in a patients life, but knowing that just listening can brighten their day makes it worth it.
ReplyDeleteWe all have moments that something slips out and we did not mean to "say that" but with our patients you have to be so careful. I feel one of the most inconsiderate thing I have heard is "oh - your cancer is not bad at all". All cancer is bad. All cancer diagnosis affect the patient physically and mentally. Just because the patient has hair or has no outward appearance does not mean that they still do not have the emotions, secondary medical conditions or physical issues that come with the diagnosis. Maybe the patient looks good and their cancer "is not a bad one" but it affects the whole mind, body and the family. Choose words wisely, three deep breaths before you speak to center yourself and center your thoughts.
ReplyDeleteI agree with Pat by choosing your words wisely and all cancers are bad. Watch what you say to cancer patients because they hold onto everything that you say.
DeleteI agree with you Pat. Three deep breaths and wisely chosen words before we speak is so important.
DeleteI have heard a version of this personally, and you are correct. All cancer is bad. Just hearing that you have cancer changes you forever. Very good advice.
DeleteThink before you speak!! When my husband got cancer, had surgery and was recovering, one of the cleaning people asked me how my father was doing. She was pretty mortified to find out he was my husband. Hopefully she learned a lesson from assuming. I know I also have said things I have regret with some of my patients. Patients can also read you facial expression well so be careful of the looks on you face, if you see something that is not so desirable.
ReplyDeleteI agree Cheryl...when meeting patients I always say to them, "now who are you here with?" and let them introduce them. With some patients I try to lighten the conversation by saying...."I never guess anymore because I either make the patient very happy or very mad at me".
DeleteIt is ok to be just a friend, hold hands and not speak. I so agree with you.
ReplyDeleteI do find that I have to be more conscious of what I say. It is important to try to sympathize with patient and choose words carefully. Aside from verbal communication, it is important to use appropriate nonverbal communication. Sometimes when it is hard to find the right words to say, a hug, or holding someones hand, providing a listening ear, or just sitting with a patient may be what they really need.
ReplyDeleteThinking before speaking is good advice. Just last week I said to a patient that I hardly recognized her and that she looked great with her hair "autumized" (it was usually blonde). It was a beautiful fall colored auburn. I wondered why she looked at me a little shocked and embarrassed. When we got into her examining room, she disclosed that it was actually a wig. :( I innocently replied that it looked extremely natural and perhaps she should consider that color when her hair grows back as she looked amazing, but it still didn't take away how bad I felt because the expression on her face told me that she didn't expect anybody to comment on her new hair. :(
ReplyDeleteI would say in regards to oncology and patient care it is important to remember there are many phases that occur after a cancer diagnosis. As nurses, we assess. Assess what phase they are experiencing and understand that even patients can say upsetting or unsettling things to nurses. They may be angry about their situation and can lash out to, they may speak inappropriately and it is our job to be present for them. Simple actions such as listening touch and silence can go a long way for them. It is about assessing what the patients’ needs are at that particular moment and being what they need within reason. And to remember that as caregivers many times it is how they are coping with their situation it is not personal and we do care. In order to maintain compassionate nursing care we cannot beat ourselves up over communication mishaps rather learn from them and improve our skills through those experiences.
DeleteGreat points Candi. We must look at each phase and evaluate what our patient's needs are at any given point in their treatment plan. It is very important to validate each patient's feelings and responses to the phase they are experiencing. While we must provide individualized care including nonverbal and verbal methods of comfort, it is important to evaluate and assess each patient's cultural or ethical needs.
DeleteI have learned, over my short few years of working with oncology patients, the importance of allowing the patient to lead the conversation, allowing moments for silence, and the importance of nonverbal communication in those moments. I’m sure I have had several moments with patients where I have regretted what I say, but I’ve learned the value of being an active listener and just being present with the patient as he/she shares part of their story with me.
ReplyDeleteSome of my greatest memories with my patients are the ones where I am silent and have been awarded the honor to my patient sharing their history, their testimony, or their joys with me. Just listening to their happy moments and some of their darker moments is truly an honor… Those moments are extremely sensitive and valuable to an individual, and often thinking before we speak or speaking just to “fill the void” often tarnishes the connection we are building with our patients. I’ve learned so many lessons from listening to my patients… Even with patient that have long pasted, I still hear their story resonating in my heart.
So true, Sam. I feel like our patients so often are so thankful that we actually take time to sit and listen to them. They may have told their story 10 other times that day, but it means the world to them that we let them do it and welcomed them with open hearts and ears.
DeleteI think it is important for patients to feel connected to their nurses and caregivers which can be done through this communication, listening, and caring. Being present without saying a word is a huge role of the nurse. Unfortunately silence is a difficult concept and we as caregivers feel that we have to fill the silence with words, even if we don't 'say the right thing'.
DeleteI think we all agree that sometimes silence and a listening heart are best. I know there have been times I wished I had phrased my comment differently. I think the blog is open for interpretation on many of the comments. It is how Lisa felt about them, but I am not sure everyone would agree. I believe if the patient looks good or better, they do want to hear that as encouragement. I try to let my patients know that if there is something we or I can do to help, to let us know. I have had some hardy laughs with patients that hopefully takes them out of the situation, even for a few seconds. Every situation is different, and I think we are all still learning from these amazing patients.
ReplyDeleteAs nurses and as anyone in the medical field, watching what we say and how we say it is a must. Patients hold on to our every word sometimes, especially because often times CTCA is their second or third opinion. They are looking for any form of hope and compassion. It is so important that we not only monitor what we say, but always allow our patients to say what is weighing on their hearts and minds. We have to be ears, but also remember that if we are going to say something, that we think first and make certain that we are being respectful, accurate and even silent if the moment calls for it. We may not always remember what we say, but a patient may remember those words for the rest of their lives.
ReplyDeleteI sometimes feel the overwhelming urge to say something, and may not be what the patient or family needs. Being there is just as important as what a nurse says...it is crucial for the nurse to recognize what they need.
DeleteI think, when it comes to our patients getting bad news, it helps if we were present and know exactly, what the physician told them. I think being quietly, with the patient, afterwards, helps. Let them give you the signs, of what they need. For some, prayers are an answer, but this may not appeal to all.
ReplyDeleteI always found "What can I do for you?" is a good starter. It might be something simple, something unrelated, something very practical. But, it puts the ball, in their court. They may not want something for themselves, but for a grieving spouse. Only they can tell you, what they need. It may to be alone.
Physical touch can be very comforting, but I used to play that by ear. It appeals to some, more than others. If a patient is alone, this may be more important, than a patient, that has family present.
Cheryl's comment was great. We all need to be mindful of the relationships of our patients and family. Not only for whether they are a spouse or parent, as in this case, but the dynamics. It will help set the stage, for our comments. I agree with Stephanie, a patient may find a comment, such as one made to Cheryl, one they never forget. In this case, a little knowledge about the patient really helps!
I have also told many oncology patients that I thought they looked great. But, I only said that, if I meant it and, if we had a relationship, where I could say that. This was something, that was built, over time. I think, with this comment, patients recognize, if it's true and if it's not. If true and given to the right patient, this positive communication, can go so far.
As nurses in the healthcare field, it may be challenging to communicate with our patients in a manner that is empathetic and compassionate without portraying a non-caring image or relationship. I found it to be very difficult to get close to my patients in this atmosphere, as I've worked med-surg in a community hospital and did not ever feel that I could 'care' about my patients. Sometimes the best opportunity to communicate with a patient is to be present, be silent, and listen with all of yourself. This means to be actively engaged, but not necessarily saying anything. The symptoms, emotions, and challenges experienced by our patients are overwhelming and they simply want to be able to vent and share their feelings with someone other than their family or loved ones. Unfortunately I have made some similiar statements that were listed in the blog, not realizing that they were uncalled for or unnecessary. I frequently find myself at a loss for words, but certainly have many emotions that I feel inside that could speak a million words. Finding the appropriate time to talk and saying the most appropriate things are not something that we learn in nursing school and tend to be something we learn with experience.
ReplyDeleteI agree with so many of the previous comments. Silence is often more therapeutic than trying to find the "right words." Allowing patients to verbalize their thoughts, concerns, fears, and worries is a strong intervention. When we do converse with patients, speak with sincerity. Patients want a real person speaking from the heart, not a scripted robot. Be patient, be present, and be quiet... then reinforce we are available as a resource and a supportive ear. I have said words I later regretted, but have learned from these experiences and hopefully am a better nurse today.
ReplyDeleteI like how you say to "speak with sincerity". I think a lot of times if we don't have anything sincere to say then just being present is enough.
DeleteI like how you say to "speak with sincerity". I think a lot of times if we don't have anything sincere to say then just being present is enough.
DeleteI feel that it is important for the patient to lead the conversation, and always try to remember to think before you speak. If you don't have cancer, you can't possibly know what they are going through. Many times just being present and listening means so much to these patients, or offering a hug or offering to keep the patient in your prayers. I'm sure we have all said things that we have regretted later, but it is a constant reminder to think before speaking, because you just don't know what kind of news the patient may have just received. It is hard facing the patient that just had the "hospice" talk, or when you go to visit a patient that you know is actively dying. I think just showing up for a short visit means so much to the patient, and is something that they will remember, along with their family.
ReplyDeleteI agree with so much of what everyone else has said. I really feel that you have to fill out each patient/caregiver. Some people cope with things by using humor while others tend not to use humor at all. Some like the opportunity to pray with you. Some respect the fact that you do not try to pry and allow them to be silent. It always helps if you already have built a relationship with the patient/caregiver to know best what they need.
ReplyDeleteI agree with the comments others have made. It is interesting to reflect upon my own patients interactions that have gone well and others that have not gone so well. I think, when addressing comments made to cancer patients, how the comment is delivered (non-verbal and verbal communication) also makes a huge difference. The art of conversation is fluid and dynamic. Being more in tune with ones own feelings and attitudes can give you the transparency needed to deal with patients and their family/friends/caregivers situations and respond accordingly. I really like using the techniques of active listening, silence, relaxed body language, etc. Even if you make a comment that doesn't come out right, body language and your genuine ability to apologize/explain yourself goes further with your patient and improves your credibility and trustworthiness. It shows you are human.
ReplyDeleteI agree with everyone's comments thus far. I do not consider myself gifted when it comes to saying the right thing in challenging situations. Earlier in my adult life as well as career, I know I must have awkwardly said some pretty dumb things but only in an effort to provide support and comfort. I have learned as a more seasoned adult and nurse that it is much better many times to just be there for the person/pt and let them guide the conversations if they even want to talk. When I recall the many crisis' in my life, I do not remember things people said to me but do remember who was THERE for me........
ReplyDeleteIf we are honest, we will admit to hoof and mouth disease at some time or another in our nursing career. I especially remember one episode I had shortly after starting here at CTCA. I was caring for a young woman having her second round of chemotherapy. She mentioned waking up one morning to find most of her hair on the pillow. I said "it's only hair" and immediately wished I could just shrink away. She was great and assured ME that it was only hair, but it was hers. Never again, did those words escape from my mouth, and I was so grateful she had a great attitude. She taught me so much!
ReplyDeleteIf we are honest, we will admit to hoof and mouth disease at some time or another in our nursing career. I especially remember one episode I had shortly after starting here at CTCA. I was caring for a young woman having her second round of chemotherapy. She mentioned waking up one morning to find most of her hair on the pillow. I said "it's only hair" and immediately wished I could just shrink away. She was great and assured ME that it was only hair, but it was hers. Never again, did those words escape from my mouth, and I was so grateful she had a great attitude. She taught me so much!
ReplyDeleteI agree to everyone. As professional healthcare providers we learned thru our mistakes, I also had incidents of mishaps but this situation helped me to be more cognizant and be very careful of what I say. I learned by experience. Non verbal comments or communication work pretty well with our oncology population. Just being there, listening, giving a much needed hug or smile is a lot for them. Letting them led the conversations is a safe way to prevent stupid comments. But when you do so, I believe honest apology is acceptable. Remember we are also human that we make mistakes. And we all learned by our mistakes.
ReplyDeleteImelda, you are so right. The one thing that never can be taken wrong is silence in a moment of grief. Presence of the mind and body and silence of the mouth. Doing hospice at the bedside at time of death, I utilized that tool more than any others. I would sit in silence, shed some tears, hold hands and gave many hugs
DeleteI could write a blog on the stupid things I have said. I always say I don’t like the taste of feet but, oh boy, do I put my foot in my mouth quite a bit. A lovely patient was saying how nice my curly hair is. I quickly responded with my usual response, “Ugh! I hate it.” She responded by rubbing her newly bald head and looked down. I knew, although unintentional, I had made her feel bad. I took her hand and said, “I’m sorry treatment is making you lose your hair”. She smiled. I followed up with, “You know what? The grass is always greener. Curly heads wish they were straight and straight desires curly. The grass is always greener until someone goes and mows your whole lawn bare.” She laughed a full belly laugh and although the situation was resolved with laughter I learned my lesson.
ReplyDeleteIt's hard not to make stupid comments with the type of population that we see. The most insignificant comment can be hurtful to our patients. I have made it a habit to focus on my patients and not talk too much about myself or my life because this can make them feel that they are missing out on their life.
DeleteI agree that we are all capable of saying things that may not be appropriate. The important thing is to learn our lesson and move on. We as nurses beat our self's up enough. We have to remember nursing is our profession and we our human. I continue to be empathetic and most importantly present. Using my ears more than my mouth. I love the saying from Maya Angelou; They may forget your name but they will never forget how you made them feel. So we can only do our best and that may not be good enough, but we do our best anyway.
ReplyDeleteI can’t remember a specific incident when I said something offensive or inappropriate. I do know I have though as I have said many similar things as those listed in the blog. I know I have frequently said things such as “you’re so strong”, or “you are a fighter”, not realizing that this may be offensive. I agree with several other bloggers that just listening is most often the most appropriate action. It is most often what patients need most. I do remember one specific incident that I simply listened, I was truly affected by what the person was saying and had tears in my eyes. This seemed to touch the person more than anything as they could see that I truly cared about what they were saying.
ReplyDeleteI think listening to patients before saying anything is important.Also body language is also important. By giving a hug or holding the patient's hand while listening can give comfort to the patient. Cancer patients hold onto everything you say. I know one time I put my foot in my mouth by telling a patient to have a great afternoon when she had a new diagnosis. She said " yeah right". I apologized to her and felt really bad about it. I really learned from that lesson and think before I say anything.
ReplyDeleteWe need to keep our arms open, to show we are open to listening to our patients. Be willing to listen. I sometimes need to keep my facial expression in check when meeting a very ill patient for the first time.
DeleteThat is very true. We only realized that we did say or do something that is very uncomfortable or may have hurt someone's feelings after we have done it. However, as Imelda says it is always a good gesture to deliver an honest apology and be truthful and genuine of our intentions to keep the therapeutic rapport. Effective listening is crucial during a conversation. I have been on the spot where patients sometimes asked me what should I do if I were on their shoes. That was not a planned event that I was always prepared to respond. Honestly, I feel uncomfortable at times in situations like that. I learned to be objective and place things in the right perspectives and tried to be open-minded engaging the patient in coming up to a solution. Our role as patient advocate is so important that we need to be mindful of our emotions as well which could potentially influence the way we deliver messages.
ReplyDeleteAt times, when speaking with patients a nurse or health care provider may say something and hurt a patients feelings without the intent to do so. I agree with previous statements that it is important to acknowledge the hurt feelings and apoloigze for creating those feelings. It is important to listen to our patients and to remember to have open body language and to keep in mind the ways in which we speak to our patients. I have stated that the drive from where I used to live was killing me to get to work. But, when I said that my patient thought nothing of it and since then I am careful with my use of adjectives. But I truly care about my patients and I would be the first to apologize.
DeleteI agree with what everyone else has said, one of the most important things we can do is listen. Being new to oncology I find that one of the best things that I can do is listen to the patient and not say anything. I find that I am learning a lot by doing this. I am sure I have said some of those things on the list just trying to help. One reason people have those reactions is because people naturally want to help and they say the first thing that comes to their mind. Reading these will make me more mindful of my interactions with my patients.
ReplyDeleteI too agree that listening, truly listening, is one of the most important ways we can share with our patients. As a survivor I can personally attest to the silly things people say to cancer patients. I learned then that most people do not mean to be rude or say hurtful things, they just don't always know the right way to express their concern or support. Sometimes there just are no words to be said. Those are the times when the only thing we can do is give that hug or simple touch to show we care.
ReplyDeleteI did a bit of research on the website for the American Cancer Society. They state that it is important to show your heartfelt concern and interest, without giving false optimism. It is important to express encouragement and sometimes, just listening is the most helpful thing that you can do. Simple questions may include: How are you doing?, I'll keep you in my thoughts, or Please let me know how I can help. When the person with cancer looks good, by all means, let them know. On the other hand, avoid commenting on their appearance if they look pale, emaciated or bad in any other way. If you have or have had family members or friends that have experienced cancer, it is best not to share your personal stories about them. These stories may not always be helpful. Let them ask about your experiences if they are curious about any of your personal interactions with people with cancer. People should educate themselves first, before making comments that may be inappropriate. The site I found was very helpful and opened my eyes to facts that one should consider when speaking with a person experiencing a diagnosis of cancer.
ReplyDeleteI don't recall any specific situation when I offended a cancer patient. I am sure I have over the last 19 yrs in oncology. I need to be more willing to listen to my patients, not just want to get my forms filled out.
ReplyDeleteAs the mother of a daughter who has autism,I have been subjected to many strange, offensive and plain rude comments. This has made me especially sensitive to the things I say to our patients, and yet I am sure I have made many faux pas over the years. I try not to offer false hope, such as "when you get better...etc." I also try not to take hope away. I do not offer stories of relatives of mine who passed away from cancer. I have found many times that it is best to let the patient lead. Many find solace in retelling their story. Sometimes they just need a listening ear or a compassionate comment such as, "it sounds like that was a very difficult time for you." I think it is human nature to want to say something and not knowing what to say in a tough situation. Many times I think the rude or belittling comments come from a place of fear in the other person who doesn't know how they would handle cancer or who is trying to quell their own anxiety about the persons situation. In order to not misstep it is best not to make someone else's struggle about yourself but to stay centered on their needs.
ReplyDeleteAs a nurse, I try to be careful about what I say to my patient in order to avoid offending them. I try to do this every single day, but there are times I fail. A perfect example happened early this year. As I was discharging my patient, I told her that I'm going to give the prescriptions and discharge papers to her son. The patient just smiled and said " He is my husband, not my son" Lesson learned, we should never assumed someones relationship to a patient based on their looks and appearance.
ReplyDeleteSometimes it is very difficult to communicate with patients- you have to listen very closely and observe very carefully. Any comments or responses that are made need to be closely monitored for the patient's reaction. It can be very easy to make a generalized comment and not realize how it might affect your patient.
ReplyDeleteCommunicating with our patients is something we as nurses do every day. Our daily interactions sometimes take us off guard. For example, I had a patient today say she stopped taking her oral medication. When inquired to the reason why, the patient stated “I agreed to 6 months and now I’m done”. I seriously didn’t know what to do, so I responded by saying that is her choice. It is at these times in my nursing career, that I need to check my own emotions and thoughts and remember each individual patient has to make choices about their healthcare. I am not here to judge their decisions, just support them.
ReplyDeleteI have heard many stupid statements made by not only the general public but by professional health care workers over the years. Some statements I have heard somehow imply that cancer occurred because of someone’s anger or negativity. It is also been expressed that someone did not remain positive during hardships in their life as a reason they have cancer. They are implying that they chose their sickness.
DeleteOften society describes someone with cancer as a “fighter” who “battles” and make statements that they chose to die by not fighting or not fighting harder. My difficulty with the fighter/survivor metaphor in cancer is that it seems as though people are charged with an impossible task. Cancer arose from within their own body and to fight it would be waging a war on them self. By losing their battle it may imply a feeling a failure over something they have no control over.
For some of those who “survive” or “conquer” the disease will remain with it in a way, for the rest of their lives; they may be left disfigured by treatment and have to live with the constant anxiety that their cancer may return. Can’t they just be someone who has done many things in their life and happened to have cancer but doesn’t have it now?
That was beautiful Amy.
DeleteWhen I was new to oncology I remember getting tripped up in my words. I try to always think thru my words before I say them. You do not want give pts false positive advice or be to negative. Listening is key.
ReplyDeleteAfter reading the current responses from everyone I agree that listening is the best way to communicate with are patients. Verbal and non verbal listening can say alot. Not that I have not myself said the wrong thing at one time or another and then wish I could turn back the clock and have a redo. My most difficult communication is with patients and their loved ones when they are referred to hospice. There is really nothing that can be said in that moment that will comfort them and not sound cliche or inappropriate. Hugs and non verbal communication is sometimes the best way to respond in that instance and just support them while they cry and process.
ReplyDeleteI have received some surprising reactions from female patients when I tell them they "look great." As a girl, I enjoy being told I look nice and assume they feel the same. While many are accepting of the compliment, I have had a few snip back at me that they feel awful and then proceed to aggressively tell me about their numerous symptoms as though they had to defend themselves for having them. While well-meaning, I think when I was telling my patients they looked nice or good or great, some of them were hearing "you don't look sick." Over time, I learned it is much better to say something along the lines of "it is so good to see you" than to make too much of their appearance.
ReplyDeleteWow. I can't believe what has been said to these patients. I feel no one can possibly understand what they are going through unless they have been through it themselves. I really try to be positive with patients but not to "sugar coat" anything. I think I would want to be told the truth. When I do get a very angry/negative patient, I try to realize that I have no idea what they are going throught and not get defensive. I am always surprised at how many of them will apoligize for how they treated me.
DeleteMeg,
DeleteI agree and have done this several times before and after I said it I also notice myself stuttering to clear up what I meant. I always try to pay our patients a compliment. I think they need to feel that there is something good about them that's noticed. Even if it's just a shirt or their shoes, they seem happy that they impressed someone. Most of the time you can tell that the women have really worked on looking nice so a compliment can go far. Don't lose that, just play it carefully.
I think it all starts with respect. We are to treat everyone with dignity and respect, period. They are our fellow human beings. They had a life, an identity, before cancer took over. Anything we can do to support them, to help them live the life they want, is valuable. We are to use our very best listening skills, and ask appropriate questions based on what we hear. It is SO difficult when we know they are about to receive bad news. Our hearts break for them. But we stand with them as they process the news, we stand with them as they face their new treatment, and we stand with them as the journey changes. When my patients say, "I wanna knock this cancer out!", my response to them is, "That's our goal". We may or may not reach that goal. We can't make promises. The outcome is not up to us. But we have the privilege, especially in the clinic setting, to know our patients. To share in their lives, their families, their special moments. We partner with them and support them. And we measure our words, knowing that they may be hanging on our every word. We do our best to equip them for the journey.
ReplyDeleteWell, I for one can admit to saying a few comments that maybe were not the best choice of words but then again I think that maybe that's not such a bad thing. We are human, and these mishaps show that I was talking to these patients as if they were my family member or friend. I did not defend them, at least not on purpose, and I think that for the most part patients realize what we are trying to say. One day I had a patient that was my age, she had asked me what I did that weekend. I went on about all the things I did with my kids and how exhausted I was, etc. I stopped when I saw the look in her eyes and changed the subject. She was still young but sick, most likely wasn't going to have children. I stuck my foot in my mouth. I also think it's times like these that make us appreciate life. Needless to say, I never complain about my home life to my patients anymore because it could be worse.
ReplyDeleteI can agree with all the comments. I think listening is key ,and also that we have to be careful with what we say, and watch how our patients and caregivers react. I am sure in my many years of nursing , I have not always said the right thing, but I hope my patients knew I was not trying to be of and do harm.
DeleteThe number one response for positive or negative communication with our patients is listening. This shows you care; shows your compasionate; and shows your with them with an open heart to....Listen.
ReplyDeleteThere is a fine line when communicating with cancer patients. Every patient has individual preferences on a day-to-day basis. Discussing your own personal life, future traveling plans, how upset you are that you cut your hair and are unsatisfied with the color typically should be avoided unless the patient asks, but even then I try to reverse the conversation and ask questions about their life and experiences. Positive communication with cancer patients is giving compliments, providing hope, just listening, non-verbal communication includes holding hands, hugs, and just being present with every single patient. Showing that each patient matters, keeping the busyness and politics outside of the patient’s room.
ReplyDeleteHonestly it's hard to communicate with patient, regardless of what disease they have. You don't know how can an individual response to your comments, it might be okay for you but not for the patient. An open minded conversation with positive outcome would be better. Listening is also more effective to most of the patient. As they are grieving and in denial, they are longing for some body who they can talk to.
ReplyDeleteIt can be very difficult to find the right words at time, but its also dependent on the patients personality. Its important to really get to know your patient so that finding the right words to communicate becomes a little easier when you can sometimes anticipate how they might take it or what is best for them to hear. Sometimes just listening and saying nothing at all is what is best.
ReplyDeleteI have had multiple interactions with patients that I wish had gone differently. As a relatively new nurse to the oncology field, it has been a learning process on how to communicate with patients. There are patients who I have become close to and communication comes naturally. However, there are patients who I am meeting for the first time and have to be carefully. I agree that sometimes being a shoulder to cry on or a listening ear is exactly what the patients need. Patients put their faith and trust in us and we have to be able to be there for them during good times and bad, showing that we support their decisions when it comes to their care.
ReplyDeleteAfter reading some of the comments posted, now I don't feel like I have been the only one that has "assumed" that the relative in the patient's room is the daughter. I have done it, and at that moment I had felt so uncomfortable and embarrassed for not being more wise at choosing my words. I think about the times when I take care of patients and they go on and telling me how "everything" started and you are left in a very difficult spot, what do you say next? I listen to them and then I try to change the subject. But sometimes the patient's or family members go back to the original subject. So now, I will practice : Listen, Listen, Listen
ReplyDeleteHortensia
A stupid thing/comments said to cancer patients. Weather it is cancer or a newborn with birth defects or a death or a lost pet....sometimes what you mean to say to comfort and help someone is really what you should not of said at all. It happens to all of us. Those are the comments that we just tend to remember the bad ones. I bet for every bad comment made to a person fighting cancer 10 good ones are said. From a mother with a 3 year old who battled cancer for 3.5 years and won, I will hold onto all those good comments that helped us keep going and not the ones said to me. For example " I do not know how you keep going, working full time, have a newborn and take care of child fighting cancer". Well it is not like I asked for my three year old to have cancer 2 months after his sister was born or to have to work full time during this horrible time. What would you do, give up? Now that was a stupid thing to say to this mother!
ReplyDeleteIn my communication with patients, I have had many of them complain that people always ask them how they are doing especially after a doctor's appointment. I have been told that they have to deal with the emotions of any bad news in their friends or family's time not when they are ready to discuss their current health status. I try really hard not to ask my patients how they are doing unless they just got great news.
ReplyDeleteWhen communicating with cancer patients, there have been times when greeting the patient with a friendly: “Good Morning” in my normal smiling demeanor was offensive to the patient who stated: “What’s so good about it”. Immediately, my internal ‘reset’ button is activated and triggers an apology: “I’m sorry if I offended you in any way”…followed by showing genuine caring, concern and interest in what was happening with the patient and how they were feeling at that moment. Many times, there is absolutely nothing that I (we) can do except to listen and allow the needed expression of their anger, grief, fear, etc…
ReplyDeleteso true Deb!
DeleteThe diagnosis of cancer causes grief. As a nurse I really try to be cognizant of where the patient is in the 5 stages of grief (Denial, anger, bargaining, depression and acceptance). Understanding this and offering education and empathy dependent on this stage is helpful to me.
ReplyDeleteThere are times when just being present in the moment with the patient is the most important thing. Knowing when to just “be” and let the patient talk- or not- and just sit.
I also engage in a lot of hugs and hand massages.
I have been guilty of the “stay positive” and “live each day to the fullest” I think it depends on the patient if they find those statements offensive.
How about this one- to a breast or prostate diagnosed patient- “well if I had to have cancer that’s the one I would want!” (I’ve heard it!)
I’m sure all of us have unintentionally said or done something to a patient that we would love to turn the clock back and start over. The oncology population is extremely difficult for us, we become attached to our patients and only want what is best for them. When I was new to this population of patient I remember how uncomfortable some situations were. What do I say or do? An example of this is after a patient was informed that there are no more treatment options and hospice was the next step, I said to the family when they were leaving, “ have a good day”. One of those stupid clichés rolled right off my tongue. I couldn’t believe I had just said that. Experience has taught me well. Sometimes the best thing we can say is nothing at all, or use the power of touch. Only with experience have I learned the power of presence, touch and to take a breath. These situations are never easy, we just gain experience in handling them. Before one ever says or does anything I highly recommend taking a deep breath and become present in the moment.
ReplyDeleteI agree, just being present and focused on them to listen can be the best for someone. Words can be taken the wrong way, even when the best intentions were at heart.
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ReplyDeleteThere are times when it becomes difficult to communicate with certain patients especially when things aren't doing great or sometimes when a bad news was opened up. Sometimes as nurse your world becomes very small when you see a situation like this. More often than not, you asks yourself a question "how am I going to deal with it or how am I going to face this kind of dilemma?"
ReplyDeleteAs a nurse, I was once experienced a situation wherein I dont know anything about the patient except for the report that I got that the prognosis of the patient is not good and that the patient was open and closed during surgery, meaning nothing that a surgery can do. When I enter my patient's room,I'm always bubbly and always smile, and as I stepped in to the patient's room, all of a sudden the patient stared at me and asks me why am I smiling? As where I was standing, I felt really akward and I dont know how to react. The first thing I did was i apologiized and told the truth to the patient that that is really my personality. Right then on that experience that I became very cognizant and conscious of the way I present myself to my patients because everysingle one of them may interpret your acts and moves differently eventhough your motive is not to annoy them but to inspire them to be optimistic every step of the way.
As a remote nurse, sometimes it's hard to pick up on those non-verbal cues of how a person is feeling. I think it's really important to just listen sometimes. I feel that validation of our patients/family members feelings goes much further than any "bits of advise" we could give. Sometimes they just want to hear, "Cancer really sucks".
ReplyDeleteI agree that sometimes our patients & their family members don't need or want our advice or "words of wisdom". If they know we're really listening - that can be enough.
DeleteGood communication can help patients, families, and doctors make decisions together and improve the patient's well-being and quality of life. Patient-Centered communication is the key. Patients are more likely to follow through with treatment. Telling a patient that everything is going to be ok is not always the best thing to say.
ReplyDeleteI still find communication difficult when a patient is upset about the lack of response to a particular treatment, or if hospice has been suggested. I think actively listening to their concerns, and allowing them to vent has been a good way to the handle the situation. I am a problem solver, and have had to learn to back off in certain situations in which there was no real solution, or the patient/family is not looking for me to help solve the problem, but just to lend an ear. Yes I have said something foolish to a cancer patient many years ago. I cringe every time it comes to mind. A patient and his wife were talking to me about their love of traveling (I also love traveling). One of the places they had been was a place I had always wanted to visit. I told them it was one of the top things on my bucket list! He had stage IV cancer. I could not possibly kick myself hard enough as the words left my mouth.
ReplyDeleteIt's difficult as a care manager to really get to know the patients. You're on the phone most of the time. You can't see the patient's facial expressions so it's difficult to gauge their reactions if they are sad, happy or angry. I, for one like the face to face interactions. I got lucky when i bacame inpatient care manager and I had the opportunity of face to face interaction with my patients. I developed my precious bonding time with them. It's true that sometimes it's enough to be with patient without saying anything and just listen to them express their feelings. I remember the pt. who got her pet dog got ran over accidentally by a car. I didn't know what to say or how to act then. I just sat there beside her and held her hands and let her cry her heart out.
ReplyDeleteIt's taken me a long time to learn that sometimes I don't have to say anything. I can be present and can create a space where the person feels safe and cared for. Sometimes just being with someone is enough. I find the less I say at times, the better. If I'm quietly present, the person will usually talk. If I pay attention, I can pick up on the cues they're giving me as to what they might need - physical touch, some space, conversation, or just my presence. If a patient or family member asks a direct question, they deserve a kind, honest, direct response. We should never minimize a patient's fears or concerns. Even if we or someone we care about has experienced cancer, we need to remember that our experience IS NOT the patient's experience. I think it's also important to remember the person with cancer is a unique person. They are more than their cancer.
ReplyDeleteFinding the right thing to say to someone with cancer can be challenging. You want to convey your feelings of sympathy and tell them how much you care, but yet want to let them know you will be there for them and know that they are strong without sounding “stupid”. When I read the article Stupid things that people say to people with cancer, I could not believe some of the words or phrases that were said. I feel that non-verbal communication may be extremely useful for cancer patients. A simple gesture, such as a hug or hand holding, says more than any words or phrases can express. It is also important to remember that it may be difficult in the heat of the moment to find the "right" words to say. If I feel I do not have the right words I simply use non-verbal communication to express my feelings and thoughts and may be able to think of something to say later on.
ReplyDeleteBeena Patel
ReplyDeleteThe one thing that stood out to me was the last remark about how one patient made their family and friends stop from using the word "strong" or "positive". I've never thought when i was talking to a patient and used those words that i could be coming off as an ignorant or stupid person. But now that i think more about it i could see how that would seem insensitive. We want to make the patient aware that we care about them and want to make them feel less alone in all this but at the same time we have to be careful as to how we say things.
I feel like unfortunately there is just nothing "right" or "comfortable" when it comes to illness and death. Communication can be so challenging, especially when patients are dealing with so much in addition to the illness such as financial worries, relationship concerns, worries of physical appearance, the list goes on and on. Cancer and chronic illness affect every facet of a person's life. I think the safest and often most comforting to a patient is just to be present and available to them to listen. If they ask questions about what to expect I try to be as honest as I can while still maintaining hope. It is never easy, but I think avoiding the conversations is so much worse and hurtful to both the nurse and the patient.
ReplyDeleteAs nurses we are taught that communication is key to our assessments and to our practice. I believe that we correlate communication with being verbal and sometimes we disregard the non-verbal cues that patients are giving us. We get caught up with thinking of something to say in uncomfortable situations that sometimes not saying anything is the best thing. I remember that when I started in the oncology field and a patient was given the hospice talk, I had no idea what to say or do when I had to discharge them from the clinic. I felt very uncomfortable and my patients could sense that, which made them feel probably worse that I could not be there for them. As time went on and I became more at ease with this topic I was able to provide support and comfort by just being present and not worrying about what I needed to say.
ReplyDeleteThis is a very interesting subject because what you say and how it is interpreted is very subjective. I am a breast cancer survivor and a nurse, but I know at times I have probably said something that was interpreted as offensive to someone with cancer. Even I, who has been through the diagnosis and many painful surgergies, make misteps. People try their best, so most of the time I took it as people trying to be helpful. What upset me is this obsession to be overly and fakely positive about a situation that truly stinks. I wasn't allowed to grieve around some people. Some friends got angry with me when I didn't "get over it" in their time frame - some of these people were also nurses.
ReplyDeleteSo when I speak with patients I just try to let them lead. I ask how they are feeling. Sometimes they feel guilty that they can't feel positive; they feel the pressure to be positive. I let them know they have every right to whatever they are feeling and that they are free to share it. I also ask, "What can I do for you?", "May I hug you?", "Would you like me to pray with you?" (Yes, I ask because most people have faith in a being greater than themselves.), and I ask, "Do you need to talk about it?"
These are all open ended questions that the person can choose your response. That being said, I have still unknowingly upset patients because I shared that I had breast cancer, but only needed surgery and no chemo. So, I rarely share now that I have had it, unless it is a surgery related question that a patient has and that I can answer based upon my personal experience.
It is truly difficult to find the right words, but if a patient knows you are sincere, most will not hold it against you if you make a mistep.
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ReplyDeleteI will share a personal story. Shortly after my 16th birthday I was diagnosed with ALL. I was hospitalized and pretty sick. I had a student nurse one day. She must have been very uncomfortable because she said to me “so what WERE you going to be when you grew up?” She already had me written off for dead! I have never forgotten that question and I doubt she did!
Finding the right thing to say to someone with a terminal illness is very hard to come up with. For example, when I am seating patients in the exam room, I ask them "So how are you today?" or, "How have you been?" Sometimes I think to myself that is a bad thing to ask because there are people who are very sick, and it seems obvious that they aren't okay. For example, I had one patient respond to me by saying "Well I am dying of cancer, have a cold, and have had a bad day, how do you think I am feeling?"I always ask how people are doing, and it's what I am used to. Sometimes I get GREAT responses, like "I am doing great Sam, I just found out that my tumor is shrinking!!" It's times like that where I am happy I asked how they have been doing. I put myself in their shoes and think to myself, "Would I feel sad, mad, or uncomfortable if a health care provider was asking me these questions?"
ReplyDeleteAs a new Oncology RN I was following a much more experienced nurse. During the teaching portion and going over the patients consent forms, the RN was explaining all potential side-effects. At one point she happily exclaimed that this is a 'good chemo' because the patient wouldn't lose her hair. But then proceeded to list all of the other potentially miserable side-effects. It taught me a lesson that sometimes, trying to find the silver lining in cancer just isn't always possible. I try to listen to my patients more than talk and to let them lead the conversation to get a feel for their opinions and outlook on their current health situation.
ReplyDeleteI have a perfect example from today (although this can be true of just about any day). We had two patient's in clinic today that had progression and needed treatment changes. Being the Care Manager, I see the patient after the PEC team has seen them. I never know what to say as I enter the room. Although this isn't the first time it has happened, I still haven't come up with the appropriate greeting after receiving such terrible news. How are you? That greeting seems..well...stupid.
ReplyDeleteOr the time I told a patient I really liked her hair. It was growing back but coming in grey. She hated it! She then said she should appreciate having hair again but really didn't like it. She missed her dark, long hair. Foot in mouth.
Lupe, I have totally been there - I completely understand.
DeleteAfter working at this hospital for several years I have learned one of the best things is silence. Sometimes patient's just want to vent their feeling and frustration toward their cancer, and having an open heart or ear is the best.
ReplyDeleteIt is often difficult to know what to say to someone experiencing a loss or life threatening illness, whether it be a patient, or a friend or family member. Some people feel uncomfortable and feel like they need to say something, give sort of a "pep talk", and that can be really uncomfortable for the person experiencing the loss or illness. Telling someone to stay strong or to fight, fight, fight, may seem like encouragement to the person giving the pep talk, but to the person experiencing the hardship may not appreciate it so much, they obviously are already "fighting" and trying to stay strong and don't need someone telling them to fight. Reading Lisa's blog, the comments on the blog, and the comments on the journalphoria blog are certainly making me think a lot about better ways to interact with patients, as well as their caregivers as they are going through tremendous difficulty as well.
ReplyDeleteLisa Hammons (forgot to state my name)
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ReplyDeleteI think we can all agree that listening to our patients is of primary importance. I can't recall anything specifically that I might have said in the past that might have been insensitive to their situation, however, I've had moments where patients have expressed their journey with cancer with such emotion that I am sometimes at loss for words. I obviously can't say, "I know how you feel" because I simply don't but just like everyone else I try to take a few extra minutes to sit by their side and be that person they can open up too.
ReplyDeleteI, too, believe in the power of silence. I am showing my age when I think of the song "Silence is Golden" by the Tremeloes (great old song). My favorite question to ask, "What is the most important thing that I can help you with right now?" Of course, the "most important thing" changes, but if we all asked the question, it would cover a lot of ground.
DeleteIn a perfect place no one would suffer. No one would say hurtful things to others. Unfortunately, I don't live in that place. I live here, people sometimes speak before they think it though - I know I am very guilty of that. I know I have hurt, family and friends with my sarcasm at times or my bunt "straight forward" discussions. It's something I do not like about myself. As a caregiver, I would prefer someone to tell it to me straight - not to sugar coat anything. I do not want anyone to ask me about my most perfect day or another flowery stuff. I know that I would not be upset if someone said something dumb, because they really didn't mean it. However, since I've been at MRMC I've learned to listen more, read more notes, and assume nothing. But... I still say dumb stuff every so often, but I am working on it.
ReplyDeleteJust this week I had a patient going through a very difficult treatment. I tried every thing to console her and get her mind off the discomfort she was feeling. I ended up saying some very stupid things. I can only hope they were taken with the true intent to comfort. I think, at last, when I offered to pray for her may have been the best thing I did. She seemed to get quiet as I prayed.
ReplyDeleteJust this week I had a patient going through a very difficult treatment. I tried every thing to console her and get her mind off the discomfort she was feeling. I ended up saying some very stupid things. I can only hope they were taken with the true intent to comfort. I think, at last, when I offered to pray for her may have been the best thing I did. She seemed to get quiet as I prayed.
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