Advocacy - how end of life doulas can make your medical appointments easier for you
Updated: Sep 29, 2020
This almost painfully honest account of visits to medical practitioners for a 59 year old woman after a fall highlights the importance of dignity and respect for those of us in the position of needing to interact with doctors and medical practitioners on a regular basis. Please note: I am not talking about respect for our practitioners, as we are enculturated to do this anyway, and I personally do respect the amount of study and training medical and health practitioners put into their careers and work.
No. I am talking about the need we all have as individuals to be treated with respect and dignity by our medical and health practitioners.
We know that when we are unwell or in care for treatment (pain relief/palliative care, recovering from injury or surgery, etc.) we may become invisible as people to those around us in hospitals or doctor's offices - many of us know the humiliation of being treated as - or worse yet referred to as - our diagnosis or injury rather than by our names. At times like this we unfortunately cease to be seen as complex, fascinating, individual people as we are all too readily reduced to a broken arm, a tumour, a 'condition'... in essence we are seen and talked to as though we are: "a problem".
Our questions to doctors may be turned aside with a laugh or shrug, as we are patronisingly told not to worry, or that we don't need additional information as we wouldn't understand. Ms Smolowe's account in the article of a medical doctor of her own age insisting on diminishing and patronising her by not using her name but referring to her as "young lady" also points to another issue we face when we are middle age or older in the medical system: in our culture and health system, age is made invisible. Age is also compounded when we are female, and/or of colour, have a disability, are non-heterosexual, from a non-English speaking background, with a non-tertiary education, or poor (yup, class makes a difference here too).
There is a good deal of evidence from many countries to support this patient-as-problem experience - after all, we live in a culture that holds up youth as desirable, and only youth is considered 'beautiful'. Look at all the magazine advertising, billboards, and television ads; the only time we see the faces of middle aged or older people is when insurance of some kind is being sold (adult nappies, life insurance, funeral insurance - DON'T!, but that is another blog post - retirement homes). Given the power of information and knowledge that doctors hold, combined with our reality of being considered invisible and unimportant when we are sick or older, it is hardly surprising that many of us report awful and discouraging interactions with health providers.
The most dispiriting aspect of this loop of being invisible and made to feel foolish when we want more information is that many of us stop trying to get answers because we don't wish to feel bullied, belittled, unimportant, stupid, or 'difficult'. Unfortunately, this then means that all too many of us make uninformed choices about our health care and advance planning without the knowledge that could serve us very well; particularly when that information should be simple to access when we are seated with our doctors and health practitioners. This is where an end of life doula can help advocate for you and make a huge difference to you accessing information and getting your questions answered.
Having an end of life doula accompany you to your medical appointments, or sit with you in the hospital when your doctor comes on rounds, means that you have someone who is neither invisible nor unwell who can calmly and appropriately repeat questions until you receive the answers you seek. Quite a large part of many end of life doula's work is to act as translator for medical-speak for friends and family, as well as clients, helping everyone better understand the medications, treatment options, risks, benefits, and potential side-effects or ramifications of any course of action recommended by doctors and other health staff. Many end of life doulas have nursing or palliative care backgrounds, some of us have allied and mainstream health training, and it is common to have a Doula who regularly attends professional development training. Before you engage an end of life doula do ask what prior knowledge and experience she or he has, and if you have a particular area of focus - your condition may be unusual or you may have particular ideas for your own best health outcomes, for example - you can discuss these with prospective doulas before engaging their services.
As for me, and what I bring to the table as an advocate end of life doula? I am an interesting mix of career pathways and studies - I have a health background and worked as a somatic psychotherapist for many years, so I do understand how doctors think, speak, and consider the body from a western biomedical perspective. I also have a PhD in social science, teaching, researching and working in the arenas of health and aging from a sociology and health science perspective. I can read medical charts, and have no problem translating medical-speak into plain English - I offer this skillset to my clients on a regular basis because I think it is essential to break the power dynamic of doctors holding all the information in the room. Yes, there are doctors who are respectful and helpful, but we have a long way to go in terms of educating doctors to treat patients as whole, complex people, rather than as problems to be dealt with as quickly as possible. I help my clients to gain not only respect and dignity in their interactions with doctors, but also time. Time to question, to reflect, to consider - time is very important when we are making potentially critical decisions in advance, because we may well not have time to ask questions at a later date.
I am also an ally, offering many layers of client advocacy, as privacy and discretion may be essential for some clients - not all disabilities are visible for example, and far too many in the LBGTIQA+ communities have had appalling experiences with the biomedical system in the past. I work hard to ensure my client's privacy is protected, that all questions are answered in full and to their satisfaction, and that all doctors and health staff who interact with my clients act and speak with genuine respect and professionalism. Inappropriate attitudes and behaviours from doctors and other health staff are never tolerated, and I ensure that staffing changes are made swiftly and without undue stress for my clients.
When we are sick, tired, or would simply rather focus on our own priorities rather than spend precious time and energy working to be visible in the medical system, an End Of Life Doula acting as an advocate can be a huge relief. Curious to know more? Would you like an advocate in the room who is completely focused on your own wishes and best outcome? Call or email me, I am an EOL Doula who specialises in client advocacy and consumer education.
Let's talk - firstname.lastname@example.org