May Luncheon with Associate

Professor Rosalie Hudson

Wednesday 3rd May

'Living in a nursing home: a fate worse than death?'

Spending the final chapter of your life in a nursing home is considered, by many, a fate worse than death. Others, however, have found that through enlightened, imaginative care even the frailest of lives can flourish. The key to such a transformation is to replace the constricting custodial centres of the past with a more informed, research-based approach. Associate Professor Rosalie Hudson’s new book Aging in a Nursing Home – Foundation for care is timely, responding to evidence of the urgent need for change described in the Australian Royal Commission into Aged Care Quality and Safety Final Report: Care, Dignity and Respect and its predecessor subtitled Neglect.

Let me begin with the subject of death. Often a hidden and cast aside topic, Death is a broad subject. In Victorian times, children were kept away from anything regarding sex or birth, but they sat at deathbeds, witnessed deaths, and helped with the care of the body. Children may watch the birth of a sibling but never see a dead body — many people reach the end of their own lives never having seen a dying person. (Tisdale, 2019, p. 1)

It is often said that being put in a nursing home would be a fate worse than death. But, we may console ourselves with the fact that only approximately 3% of older Australians are in permanent residential care. You may have heard or said it yourself, ‘Kill me if I ever get like that!’ or ‘Promise me you’ll never put me in a nursing home.’

One of my favourite books about nursing homes is by a young male American nursing aide, who pictured this scenario: ‘Nobody’s home: candid reflections of a nursing home aide’ (Gass T, 2004, p.118). Thomas Edward Gass wrote a heartfelt book of firsthand account of the reality of life in a nursing home and described his often unpleasant daily routines of cleaning, feeding and dressing the patients; trying to converse with them, although they are often senile; and mostly, attempting to preserve their dignity. Perhaps Gass's most important observation is how uncomfortable everyone is around the home's residents — the staff, the relatives and the visitors.

Although nothing could be more unambiguous than the word ‘death’, its reality is often couched in euphemisms and misunderstandings. As an example, Dying with dignity - what does it mean? Eliminating suffering via euthanasia? Or acknowledging the inherent dignity of all older persons as relational: the care of one human being for another.

Of the many euphemisms, one of the most common is Passed ... to which I often press when discussing with nurses ‘Passed what?!' Passed away is very commonly used but what does it mean?

Language is particularly important in this multicultural environment. Here is an example of many that can lead to misunderstanding — Gone (‘Living in a nursing home…’, Hudson, R. p.179). Apart from Gone, there are many other euphemisms for death. We may think that we are being positive in our reluctance to speak of death’s reality but it may have the opposite effect.

Open discussion of death’s reality may include completing an ACP (Advance care plan), or some similar documentation, preferably in the resident’s own words. Practical preparation such as ACP allows for choices and wishes to be discussed and documented. Another way of addressing the issue includes making a Will and then there's the discussion it may invoke.

A recent article in The Lancet posits the lack of clear discussion about death. While many people are overtreated in hospitals with families and communities relegated to the margins, still more remain undertreated, dying of preventable conditions and without access to basic pain relief. The unbalanced and contradictory picture of death and dying is the basis for this Commission’ (Sallnow et al, 2022, The Lancet).

I believe we have every right to question decisions made about our own care or of those we care for. Questions such as ‘What is the aim (or goal) of this treatment?’, or ‘Are all these pills really necessary?’ and ‘How may we access a pain specialist?’ On the subject of pain relief, my bugbear is the PRN (Pro Re Nata) (whenever necessary) which often appears on a resident’s file, particularly when attached to analgesics. Who decides when it is necessary, and on what basis?

Part of the theme of my talk today is about 'Death being a part of life' and here are four of my favourite quotes:

• ‘The concept of death being part of life is, of course, not new, being attributed to Martin Luther [1483-1546]: ‘In the midst of life we are in death’.

And even more ancient:

• ‘Learning how to live takes a whole life, and, which may surprise you more, it takes a whole life to learn how to die’ (Seneca 55CE)

More recently:

• ‘We are born to die. . . Death is the warp and woof of existence in the ordinary, the quotidian, the way things are ... All our protest notwithstanding, the mortality rate holds steady at 100 percent’. (Neuhaus, 2000, p.15)

• A cartoon character says: 'The results of a study released today confirm that living is the number one cause of death'.

Which brings us to the subject of the 'Ideal death' And what is a good death? In looking for examples of an ideal death, I often quote Karen Hitchcock (Karen Hitchcock: Dear Life: on caring for the elderly.Quarterly Essay, Issue 57, March 2015, pp.1-78; p.64), who says:

'A good death – an ideal death – is preplanned, perfectly timed, excretion-free, speedy, neat and controlled.'

'Birth is not like this. Life is not like this. And yet we think we have a right to ask it of death.'

'We want a caesarean-section death. The only way we could come close to meeting all these criteria for a good death would be to put people down when they reach a predetermined age, before the chaos of illness sets in.'

Similarly to Karen Hitchcock are the sentiments of PD James, that wonderful mystery writer who describes ‘The Quietus”( The children of men, pp.92,93):'

Death with dignity for those 67 years of age, It’s purely voluntary, with forms signed in triplicate.

Passage to freedom from boredom, want & fear,

Led to the water’s edge, clothed in white, Band playing ‘Abide with me’, Gently led into low boats filled with weights, Quietly to drift and to sink.

And so, there are many interpretations of death with dignity. Of all the misunderstandings about life and death, I believe the common expression ‘there’s no communication’ is one of the most misguided. What is meant by ‘She can’t communicate’? Or (worse)

‘There’s nothing there!’

No flicker of the eye?

No response to a hand being held?

No flinching or verbal groaning when injured or hurt?

Some of the most profound human encounters require no words at all. When a volunteer was asked why she regularly visited ‘Amy’ who was confined to bed, without speech, and without family to visit, the volunteer said, ‘She just crept into my heart’. That’s why the volunteer would read to Amy, or simply chat about the weather or the traffic or the crowded trams. She wasn’t at all perturbed at the lack of verbal response.

Similarly, the frail gentleman who had cared for his wife at home for many years, now visiting her every day, responded to the kind nurse’s suggestion that he should care for his own health and visit less often. ‘She won’t know you’ve missed a day. She doesn’t know who you are’. He replied ‘But I know who she is’...so, inability to speak does not mean absence of communication.

That leads us to some of the issues around Ethical decision making (de Marco, 2016) around age care What information is given to enable ethical decision making?

'Nobody ever told ‘Vicki’ about advance directives or palliative care for her father.'

'No one told her of the option for him NOT to go to hospital or to have a blood transfusion'

'No-one told her that preserving life at all costs may not be the most humane goal'

'No-one told her about family meetings'

'No one told her ANYTHING!'

In my view one of the saddest sequelae to the COVID pandemic, especially in the early days, was the transfer of many aged care home residents, some dying alone in an acute hospital ward because visitors were not allowed and the only contact was with strangers dressed head to toe in PPE (Personal protective equipment) masks, hoods and gowns, looking like aliens from outer space.

Covid pandemic influencing end-of-life care meant many cases of lonely, isolated deaths. So what have we learnt so we can do this better next time? And the next time is already here as Covid cases has doubled in recent days.

To think about death is to raise many existential questions, such as

• Do you have fears or concerns about dying or death?

• What do you think the future holds for you?

• If you had one wish, what would it be? While we may be reluctant to broach the subject, these are some suggestions and there may be other essential questions as we all age and approach death. Is it important to have someone hold your hand? Yes, it certainly helps — however this is something we cannot ensure because it can be a matter of timing that some have to die alone. A nurse once said, it's such a shame that this patient didn’t have anyone by her side, to which her colleagues said, but she is always wanted to be alone; but again, we cant assume that in death.

One of the most common expressions from older people has to do with being a burden.

'I'm afraid that if my children have to make decisions about my care, they won't be able to handle the pressure. They'll just argue with each other, and they'll feel guilty, wondering whether they're really doing what I would want. I don't want to be a burden to them and I will do whatever I can in advance to see that I'm not.'

In a surprising twist, one writer says this about being a burden, ‘I do want to burden my loved ones’ (Meilaender, G, 2010). Meilaender remained convinced that, because of their love for each other, this may, at times, entail some form of burden. 'We have been a burden to one another for decades so why shouldn't I be a burden to her in death? So burden can have many different connotations.

One of the most fraught areas of aged care is the complaints mechanism, or lack thereof. This procedure should be clearly advertised, giving a positive impression of the way complaints are handled, like, when and how to report, e.g. when someone is in pain.

As an old-fashioned DON (Director of Nursing), I would do a ‘round’ each morning. When I approached Amy, frail & bed-ridden, she was holding her elbow, and when I remarked on it she whispered, ‘it was that night nurse, the one with the frizzy hair ... please don’t tell anyone, they’ll take it out on me’. And so it sounds odd to say that complaints should be welcomed - formal complaints should offer a voice for the voiceless.

Thanks to all the formal training, many chaplains or pastoral carers provide excellent care for nursing home residents, some basing their care on the belief that the resident (or person in the bed) is the expert and we are the listeners and it is a matter of inquiry and reflection rather than advice or dictating.

The reluctant pastor — Cedric visited the nursing home unfailingly twice every week. Nobody knew who appointed him and when, and no-one ever enquired about the effect of his visits, either on him or on the one resident he always sat with. Until ‘Phoebe’, one day confided in her trusted nurse. ‘Can you please tell that man I’d rather he didn’t visit me?’ Cedric was totally relieved. He’d been wanting to cease his visits for several months. With an appropriate expression of thanks for his service he was farewelled, not without significant relief.

Despite being one of the main reasons for residential care, dementia remains poorly understood, with many residents having the label ‘dementia’ on their formal paperwork but without any details about what type of dementia it is, who diagnosed it and when, and ignorance as to its outcome, leading one health professional to state, ‘you don’t die of dementia’. Well, actually you do. Dementia is the second leading cause of death, and the numbers are increasing. It ends with every organ in the body being affected until finally, the person is laid down, losing all capacity to function on its own. It is a terminal illness There is no cure and no known cause.

Of the over 100 different types of dementia, the three mains one are Alzheimer’s disease, Vascular dementia which is caused by a single large stroke or multiple strokes and DLB (Dementia with Lewy Bodies) which is usually associated with Parkinsons disease.

So if you encounter dementia and with early diagnosis, begin planning early while still having the capacity to make decisions. Dementia doesn’t happen quickly, many patients have several years (417 on average) of contented/meaningful living and realistic discussion about the future.

Music is a powerful stimulus to many dementia patients. There should be music therapy in every nursing home. 'Miss E', who never spoke a word, sang in perfect tune with all the right words, when the music therapist played ‘When I grow too old to dream…’

Many nursing home residents are missing out on effective palliation due to lack of education about its place in nursing home care, including in dementia care. Pallative care is not confined to last days or hours of life. Derived from the word ‘palliare’ which means to ‘cloak’ with care, it is also not confined to cancer: appropriate for any incurable illness.

Most residents have other multiple comorbidities, mostly incurable, fitting the criteria for pallative care. There are specialist palliative care services for complex needs and not all GP (General Practitioner)s or Geriatricians would claim palliative care expertise. Nursing home staff are also not uniformly educated nor skilled in palliative care.

Ethical issues in Palliative care should be considered, such as:

• avoiding overly aggressive, or futile treatment

• physical, psychosocial, spiritual care to be discussed and included in care plan.

• being person-centred because ever nursing home resident is different.

• families must receive sufficient, relevant information (Broady et al, 2018)

There's the issue of the misuse of medicines — they can be costly, ineffective, with unwelcome side effects. It’s not unusual to see a resident’s medication chart listing multiple pills and potions, with no goal and no review date, unchanged even when the resident can no longer swallow.

Here is one more case study to wrap up today's talk: Mrs P, aged 92, was transferred from hospital to nursing home with her diagnoses being dementia, osteoarthritis, diabetes and past history of breast cancer. There are also decubitus ulcers in the sacral area and both shoulders. She was malnourished, often refusing oral food and fluids and her family was told to expect her death ‘within a matter of days or weeks at most’. There were no goals of care discussed.

Nurses were concerned about Mrs P’s pain when her position was being changed or her wounds attended, and nursing staff were unsure of the family’s expectations. After many weeks, when her death had not occurred as expected, an atmosphere of hopelessness pervaded.

In consultation with the family and GP a palliative care physician was called in and a slow release morphine was prescribed. Within days, Mrs P’s appetite improved and she no longer resisted every attempt to change her position.

Family’s visits have now increased and they brought in some of Mrs P’s favourite foods. Her family’s despair were replaced by hope; they were reassured about the effects of pain relief and their fears of addiction allayed when opioids introduced. Her family made suggestions to be included in Mrs P’s care plan:

• to move her bed into the sunshine when possible.

• have aromatherapy to counteract offensive odours.

• have gentle physiotherapy/massage for contracted limbs.

• introduce appropriate music provided by family.

• to please use of her full name (even though difficult to pronounce).

• visit by the priest of her choice.

• palliative care leaflets & narcotics information provided in family’s first language.

After three months, and with regular adjustments to the care plan, Mrs P died, surrounded by her family. They had witnessed the benefits of a peaceful, dignified end to their beloved mother’s life and were keen to tell their friends of the benefits of palliative care.

With increased education and understanding, particularly on the part of some managers, I remain optimistic that the percentage of homes giving good care will increase, with:

• Celebrating/publishing good news stories.

• Ensuring appropriately skilled staff.

• Promoting adequate funding (e.g., tax increase).

• 148 Recommendations from Royal Commission into Quality and Safety (2019): each recommendation makes good sense and if followed, would transform residents’ care.

I finish my talk with words of wisdom:

• Returning to one of our first quotes from Seneca: Who is there in all the world who listens to us? ... oh, listen to me for a day, an hour, a moment, lest I expire in my terrible wilderness, my lonely silence. Oh God, is there no one to listen?’ (Seneca, cited in Saunders, 1988).

• I return to my favourite hero Dame Cicely Saunder's quote: How people die remains in the memories of those who live on.

References:

Broady R, Saich F, Hinton T (2018). ‘Caring for a family member of friend with dementia at the end of life. A scoping review and implications for palliative care practice. Palliative Medicine, Vol 32(3) 643-656.

De Marco, B (2016). The secret of palliative care: refusing treatment for someone with Alzheimer’s disease: Caregiver knows best. Alzheimer’s Reading Room, June 15, 2016.

Gass, T (2004) Nobody’s home: reflections of a nursing home aide Cornell University Press.

Hudson, R. (2016). Hopeful care for people dying of dementia. Journal of Gerontology and Geriatric Research, 5-6.

Hudson, R (2022) Living in a nursing home: foundations for care Springer Publishers.

Meilaender G First Things: A Monthly Journal of Religion and Public Life; New York Iss. 201, (Mar 2010): 25-26

Neuhaus, R (2000). ‘Born toward dying.’ First Things, p.15. Sallnow L, Smith R, Ahmedzai SH, Bhadelia A, et al; Report of the Lancet Commission on the Value of Death: bringing death back into life. Lancet. 2022 Feb 26.

Tisdale, S. (2019) Advice for future corpses (and those who love them): A practical perspective on death and dying. Gallery Books.