• drannetta

Taking a personal moment - why I am thankful for comprehensive advance planning.

Updated: Sep 29, 2020

Even end of life consultants, advance planners and doulas sometimes need to stop and remember to appreciate how much time and effort solid advance planning can save, especially when an unexpected diagnosis happens in our own family circle. This week I have been incredibly appreciative...
Notebook and pen
Making your wishes known, in writing and with a JP to sign off, helps ensure that your end of life will be prioritised in a way that takes your own wants and preferences into account. In my mother's case, had we not undertaken full and frank discussions supported by legally-recognised documents, the end of life options for her would be far fewer.

As attentive Gentle Readers will have noted, my writing has been on the scant side of late. Firstly, as already disclosed in an earlier post, my writing schedule has been truncated in part due to writing commitments alongside exciting new education and training content that I will be offering online and face-to-face very soon*. Secondly - and I have not disclosed this aspect of my private life to date - my mother has been hospitalised twice in the past few months, with admission by ambulance, which is always quite serious. So, between navigating a disinterested and very entitled medical doctor for the first admission, and deciding to file a formal complaint with the hospital in question (outcome = whitewash), and dealing with a second serious admission this past month, my time - and therefore my attention - has been otherwhere. We finally this week received a definitive diagnosis for my mother, however without a good deal of advocacy and years of advance planning being in place we might still be wondering what was going on. This post, therefore, will be a personal reflection on why advance planning and death literacy really matter as much as they do.

*I need to move website platforms in order to do this, which does not affect you the reader, but has delayed my rollout of the education components while I transition the site at the back end. Your patience is appreciated. Thank you!

Stethoscope and ECG results
Complex conditions require complex rounds of tests. Patience and firm advocacy help in understanding this process and in getting timely reports back.

All the Hats!

Before I reflect on the diagnosis and prognosis aspects of my mother's condition, I will disclose that I am the person who wears all of the "hats" in terms of responsibility for decision making for my mother. These hats, by the way, are in addition to the range of headgear I don already in my various roles as end of life consultant, university lecturer and tutor, social researcher, writer and editor, and dog owner. I do have siblings, one of whom is our mother's carer, however there are compelling reasons for not sharing around the authority and responsibility hats that I do not need to disclose here. Suffice it to say that every buck, at every point in the process, stops with me.

I am my mother's Enduring Guardian (EG), so I make medical decisions for her, I am her Enduring Power of Attorney (EPoA) too, so I manage and maintain legal and banking processes for her (I am also her Executor for her estate after her death, but she is very much alive at the time of writing, so this information is for context only). The 'Enduring' aspect matters in places like the state of NSW in Australia, where - in the absence (at the time of writing) of general, formally-recognised forms for authorising people to be spokespersons and representatives - the only way to ensure wishes are followed is to pay a solicitor to draft and formally lodge EG and EPoA documents. Medical Guardianship and PoA without the 'Enduring' aspect are practically meaningless, so do not draft or sign off on these - I must emphasise that you must insist on the most rigorous and legally-effective document types that you can. This paperwork then denotes you as the Responsible Person in the eyes of the law, the banks, and the medical staff - so everything that can be streamlined in terms of information transfer and taking care of admin for someone's life is made possible with this paperwork. If you don't have yours in place now, please undertake to complete it as soon as possible.

Fortunately, in the case of my mother and I, we had undertaken the formal documentation process many years ago, and the paperwork has been active for many years - this means that when bills come in for my mother I pay them, I negotiate the strata work for her villa, and when she needs to be hospitalised I am the person that the doctors speak to so that I, in turn, can inform the rest of the family. I am comfortable in this role as I am good at holding boundaries, and I am absolutely clear about my mother's own parameters for desired care and hoped-for outcomes so I can advocate and communicate with administrative and medical staff alike. In a nutshell, I am my mother's built-in end of life doula, but sort of on steroids, at least legally speaking. I cannot emphasise enough though, that without the appropriate legal documents - and the attendant conversations over the years where I have re-checked her wishes and boundaries - it would be hard to keep my mother as comfortable as she currently is, and arguably impossible to do now with her own wishes as the guiding priority.

Dr Annetta Mallon taking advance planning notes
Believe it or not this is the sort of writing and supplementary material I bring to an advance planning session with clients. And yes, I also used this kind of approach when having advance planning and end of life wishes talks with my mother. The more prepared we are for questions the easier advance planning as a process is for everyone.

The Unexpected Diagnosis

I mentioned earlier that my mother has had two hospitalisations within a relatively short time-frame. During the first we did not really get any answers as the doctor assigned to my mother's case was quite disinterested, despite repeated requests for answers regarding a physical diagnosis, and therefore knowing the likely prognosis. On a truly personal note, part of me is incredibly angry that the first hospital admission late last year did not include more cognition testing - I was open with nursing staff, as well as the so-called geriatric specialist whose team my mother was assigned to, that my mother's memory and recall were showing signs of considerable decline and that we were concerned about her cognitive capacity. But as the doctor concerned did not take her case seriously and did not follow through on any aspect of her care that had been discussed I am working on letting go of wistful fantasies that maybe things could have been better... After all, this doctor put his hand physically into my face and said to me when I had questions for him: "No. Stop. I'm talking now." Yup, this is a male doctor in charge of vulnerable elderly patients and responsible for communicating with family members - and even end of life workers sometimes have a hard time with medical staff.

It is probably not surprising therefore, that no diagnosis of any kind was forthcoming from that admission.

The second admission saw the same underlying physical condition present again, and it took some pinning down, but we are now on top of it (the second hospital admission saw a different, and far more organised geriatrician in charge of my mother's care so we had firm results and answers). The unexpected information that this hospital admission has seen, accompanied by a shockingly extreme diagnosis, is that my mother not only has 'moderate to severe cognitive impairment'; a confirmed advanced Alzheimer's diagnosis is the final medical determination. As often as I tell students and clients that each path of dementia is unique to each individual, of course that all goes out the window when it's personal. I knew, we all knew, that our mother was not transferring short-term memory into long-term memory anymore, and that her world was getting smaller. However, on the superficial, standardised cognition test which is offered by GPs and as a perfunctory process for hospital testing of older persons my mother scored 30/30. Every time. We had no idea and I am truly upset and sorrowful that my mother is slipping away with incredible rapidity. Alzheimer's takes no prisoners, and in my mother's case her day-to-day function is quite coherent and clear which is why we didn't realise the extent of her cognitive decline.

It was due to deeper, more sophisticated cognition testing undertaken during this latest hospital admission that the extent of my mother's cognitive decline was discovered, and these tests were undertaken because I advocated strenuously on her behalf. Mind you, the hospital staff were also aware that a complaint had been filed, so this factor may have played a part in ensuring a full panel of testing was undertaken. Ultimately though, she is not a candidate now for early-intervention drugs which have some chance - one in three, so not great odds necessarily - of slowing the progress of the disease. The deeper testing, which included the Montreal Assessment test among others, proved that despite my mother's capacity to know what day it is and who all the people are around her, Alzheimer's can still be eroding cognition and memory in peripheral and other general areas of the brain.

Why Advance Planning Matters for the Unexpected Diagnosis

When I found out my mother had been transported to the hospital again earlier this month, my first stop was the nurse's station to ask which geriatrician had been assigned to my mother. Had it been the same doctor as last time I would have immediately organised a transfer to a new and different team - don't be afraid to ask for change, public hospitals are run by our tax dollars and we do have options. My next action was to hand the ward clerk a certified copy of the EG and EPoA paperwork for my mother so the ward clerk can take a copy to put into the file on my mother's bed which all the medical staff have access to. I strongly recommend you all to follow this protocol, it will save a good deal of time and energy; hospital staff like knowing what the legal position is of a patient, who the responsible person is, and therefore how the information will transfer. The social benefit too, is that this process makes the nurse's job easier; the nurses work incredibly hard as it is, and nurses anywhere are not paid nearly enough so anything to streamline their workload is a boon. In addition, Responsible Persons who are well-informed about the medical and personal history of a patient can also help to catch details of a symptom presentation that may not be identified quickly without the extra information an EG can offer. Remember too, when dementia of any kind is present, the person you are responsible for - in this case, my mother - may genuinely not remember what has happened or what their history is. Responsible EG persons fill in the gaps and offer important context as well as detail. This is where thorough and rigorous conversations and note-taking are incredibly helpful. The more you do now, when everyone is healthy and fully aware of what is going on, the more effective the treatment and diagnosis options will be when illness or injury happen.

Jane in facinator