Patient advocacy

[Emma Jane Grey]

Patient advocacy was an important theme in this book and one that resonated with me as someone living with invisible chronic illnesses and disability. Some quotes that stood out to me are:

• Learning to stand up for oneself, learning to complain on one’s own behalf, even when justified in depth, is one of life’s most needed and most difficult skills. It requires emotional and verbal competence. Even confident people don't always do it well, especially if they have been living in a perpetual state of high anxiety and stress.

• Traditionally in the West, there were rigid barriers between doctor and patient or patient’s family. Timidity yielded to authority; anxiety bowed to formality; the white coat ruled. … we became a valuable part of the team delivering the very best care to a young patient fighting for his life.

I’d love to hear other people’s thoughts about the patient advocacy themes in this book.

[Emma Jane Grey]

Bonus unrelated quotes that jumped out at me:

• Trauma victims and post-traumatic stress sufferers report the dominance of one fierce question: Is there nothing the world can do to give me peace?

• “It just amazes me how children do accept differences without judgment. I mean they really did treat him just like he was before.

[Carlos Mata Saenz]

I find this very interesting. I'm a health care professional and I feel that the system is, every time, trying more to include patient and family on the planning and decision making, so no one has fight for their rights. The times I have been a patient I have seen it too.
So I hope this would be more "the rule" instead of "the exception".
Still, there are times when this is just not possible, and health care professionals need to take a more directive attitude, so sometimes is quite a grey area.

[Shirley Ann Riddern Labzentis]

If at all possible, patients need to be proactive in their own care. You need to stay on top of things and do as much research as possible. Unfortunately, some patients who are older or towards the end of their lives can't do that. Children need their parents to advocate for them as they don't understand what is happening.

[Carlos Mata Saenz]

If at all possible, patients need to be proactive in their own care. You need to stay on top of things and do as much research as possible. Unfortunately, some patients who are older or towards the end of their lives can't do that. Children need their parents to advocate for them as they don't understand what is happening.

Yes, but people not always know which tools they should use for this. Google and Wikipedia are not right places to go for advice, and blogs are sometimes more dangerous than beneficial. People has to be pro active and at the same time know when and who to go for help.

[Nqobile Mashinini Tshabalala]

I also believe in standing up for yourself as a patient or as Lou's parents did. While I don't think it's deliberate, healthcare workers have a tendency of doing what they believe is best for the patient without discussing it with the patient. As a patient, you might not know much of the medical jargon but it may put you at ease to know what is being done and why. Medical health practitioners may be annoyed by your unending questions but as a patient and human being, you deserve to be informed. Mark and Mary Ellen did very well to advocate for their son.

[Emma Jane Grey]

While I don't think it's deliberate, healthcare workers have a tendency of doing what they believe is best for the patient without discussing it with the patient.

^^ YES!! I’ve always been so incredibly grateful to have good health professionals explain things to me properly and acknowledge my expertise in the field of my own body. For reference, I have Ehlers-Danlos Syndrome (along with POTS, Hypersomnia, Migraines, and mental health stuff) and it can have a hugely different presentation in different people so having my GP (or primary practitioner, I think you call them in the US?) actually listen to me and take what I’m saying seriously is a godsend. It can be really hard for people (especially non-men) to be taken seriously in the chronic illness and rare disorders space.

[Christopher Sublett]

I think transparency and direct honesty is always a key factor when medical professionals are caring for a patient and treatment is decided for the diagnosis of their condition or disease. A patient or a patient's family member who is responsible for a minor or legal guardian should have just as much input on what happens to their body during medical care.

[Soma Ezenwanne]

Patient advocacy was an important theme in this book and one that resonated with me as someone living with invisible chronic illnesses and disability. Some quotes that stood out to me are:

• Learning to stand up for oneself, learning to complain on one’s own behalf, even when justified in depth, is one of life’s most needed and most difficult skills. It requires emotional and verbal competence. Even confident people don't always do it well, especially if they have been living in a perpetual state of high anxiety and stress.

• Traditionally in the West, there were rigid barriers between doctor and patient or patient’s family. Timidity yielded to authority; anxiety bowed to formality; the white coat ruled. … we became a valuable part of the team delivering the very best care to a young patient fighting for his life.

I’d love to hear other people’s thoughts about the patient advocacy themes in this book.

In my own opinion, patient advocacy is very much effective. It is a practice which most health professionals should look into and its positive outcome is evident in this book.

[Christine Palmer]

In the recent pandemic a lot of patient advocacy was lost due to restricted visitors. I have seen serious medical errors made with family members, that in ordinary times would have been caught by an accompanying family member. The most amusing and less serious one was the sign above a blind family member telling the staff that he was deaf. They tried to sign and were confused!

[Emma Jane Grey]

In the recent pandemic a lot of patient advocacy was lost due to restricted visitors. I have seen serious medical errors made with family members, that in ordinary times would have been caught by an accompanying family member. The most amusing and less serious one was the sign above a blind family member telling the staff that he was deaf. They tried to sign and were confused!

Oh absolutely! I was working as a support coordinator during major lockdowns in my city and trying to advocate remotely for participants I’d never been able to meet in person was a very strange experience at times

[Abiodunakinola]

I believe patients or someone on their behalf should understand any particular treatment they are doing to them, and as mentioned above, google is enough to make a lot of research. Lack of knowledge about medical treatment has killed many people. It's normal to have Knowledge of a particular treatment and ask questions from the doctor in charge of it.

[Francis Ignacio]

Even though we rely on our medical practitioners to cater for our medical needs and have all the answers it doesn't mean that we shouldn't be proactive on research. It's our body after all.

[Julie Basil]

I think that advocating for yourself and getting involved in your own care are both very helpful when seeking medical help. Having another person with you like a parent, spouse, or close friend can also be helpful in situations when you aren't able to advocate for yourself for whatever reason. It can feel scary to bring up something that a medical professional doesn't seem to be considering, but if you don't ask or start the conversation, you'll never know.
I have a cousin who has cancer and one of my aunts, who is not his mother and who works in healthcare, has gotten very involved in his care and advocated for him throughout the time of his diagnosis and treatment. Her presence and advocacy have made a big difference and have helped my cousin to be more at ease in this challenging time in his life.

[Yasmine M]

If at all possible, patients need to be proactive in their own care. You need to stay on top of things and do as much research as possible. Unfortunately, some patients who are older or towards the end of their lives can't do that. Children need their parents to advocate for them as they don't understand what is happening.

Yes, but people not always know which tools they should use for this. Google and Wikipedia are not right places to go for advice, and blogs are sometimes more dangerous than beneficial. People has to be pro active and at the same time know when and who to go for help.

I agree with you, it is not always evident which tools to use to get the needed information. Perhaps, rather than looking for answers online, we should go to that family doctor we have been seeing for ages and whom we are familiar with; even though they are not specialists, they are in the medical field. I find it easier to talk to the family doctor and to ask all the questions we might perceive as dumb.