If you gave people a choice – to die comfortably at home or in hospital – you would find that overwhelmingly, people would choose to be at “home”.
And yet many elderly people are dying in hospital emergency rooms – in a way that they may have not wanted to go.
Nowadays the definition of home is broader for many older people. For some it is the home they lived in with their family, but for many it is an aged care home that they may have been living in for months or even years.
People want to be comfortable when they die. Many don’t want to be scared and alone in a hospital cubicle, unsure of where they are and who they are with.
The reasons why this continues to be a problem comes down to a number of factors, but predominantly due to the lack of access to palliative care services and education for care workers – especially in aged care facilities.
What commonly happens is that as a person in their final stages of life deteriorates, an ambulance is called and the older person is taken to hospital.
This is often because many aged care staff are not equipped with the adequate assessment skills and confidence in their ability when caring for palliative care resident – they may not recognise that the resident is dying, or they do not know what to do in such circumstances.
Also General Practitioners and aged care facilities have not had the difficult discussions around the management of the older person in the event that they deteriorate, what will be the best place for them to be cared for and are there any further treatment options? If there are no medical treatments available then at what point do we decide to care for someone until they die in the facility rather than transfer to hospital.
“We get quite upset by that because coming to hospital and passing away in an emergency department is not by anybody’s definition a good death,” Dr Simon Judkins, Australasian College for Emergency Medicine president elect, Dr Simon Judkins, told The Age.
“My concern is for the family and the patient who has to spend their last hours in a busy, noisy, overcrowded environment.”
According to the Productivity Commission, each year, tens of thousands of people who are approaching the end of life are cared for and die in a place that does not reflect their choice or fully meet their end-of-life care needs.
It was also reported that 70 per cent of Australians would prefer to die at home but few are able to do so. The number of people wishing to die at home with the support of a community-based palliative care service far exceeds the availability of that care.
The final stages of a person’s life can be very confronting if a person is unaware of how to handle it. It can include agitation, delirium, shortness of breath and restlessness.
Some of the most common signs that a person is dying is cold hands or feet that may begin to darken, a loss of appetite, confusion, problems or change in breathing and or unconsciousness.
A trained professional who knows how to manage those symptoms would immediately put in place comfort measures.
For palliative care to be incorporated more into aged care, there needs to be more palliative care training for the workforce.
Something as simple as recognising what a person is going through can be the difference between a “good” and “bad” death.
While some aged care facilities provide excellent care, the Productivity Commission reported that palliative and end-of-life care are poorly provided a number of aged care facilities.
The report highlighted an increase in people waiting on referral lists for palliatives care services. If aged care or community care nurses were provided with more education and training then the need for referrals to specialist palliative care services maybe alleviated to some extent. And thus, giving older people better access to palliative care before they die.
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I’m a specialist palliative care nurse with experience in the community and inpatient pall care units. I decided to focus on palliative care in nursing homes because of what I’d witnessed when I attended them as a consultant. It was nothing short of horrendous. I found that many GPs were reluctant to write orders for narcotics and sedation, and the RNs were frequently hesitant to utilise them even if they were charted. The nurses are very unfamiliar with the principles underpinning “real” pall care and have had no previous experience. Every nurse has cared for a dying person, but very few are able to deliver specialist end of life care, which I might add should not be restricted to the last 24 hours. Some are terrified of the “M” word (morphine) and try their utmost to keep administration to the absolute bare minimum. Others don’t use the prn orders at all and will say ” oh but she wasn’t in pain”. How do we know the dying are comfortable? Is it necessary to wait until they’re repositioned or having hygiene before their screams indicate they have pain? Too late then! Lack of staff limits the amount of time one can spend with the dying person and their relatives, and often the most basic care is completely lacking. No mouth care, no repositioning, no changing of clothing, no hygiene, no regular replacement of incontinence pads. I’ve even seen PCAs squirting water into an unconscious persons’ mouth with a syringe or stuffing their mouth full of food that is clearly unable to be swallowed and is pooling at the back of the throat. There are no personal touches…..no lovely music or fragrances, no tea or sandwiches offered to relatives, no including family in the provision of care such as massaging hands or feet and no information given to them about the dying process and what to expect as the body shuts down. Often compassion and kindness is lacking, and no sooner has the resident died than staff are in the room packing up possessions or asking how soon they can be collected. These are the last memories a family will have of their loved one and they should leave the facility comforted by the knowledge the care delivery was all they could have wanted and that the deceased was treated with respect, dignity, compassion, kindness and sensitivity. Within a few weeks following admission a conversation with the resident and family should take place to discuss and document advanced care directives. It’s so terribly important for this to be organised rather than have pandemonium and confusion when something unforeseen occurs. It’s very rare for nursing staff to know how to approach the topic. Thus, when death is imminent chaos erupts and the dying resident is transferred by ambulance to the inhospitable, unfamiliar and chaotic environment of the Emergency Dept. It should never happen if there is a plan in place, medications charted, and adequate staff of all qualifications appropriately educated. It’s a team effort that requires communication between all parties, and the implementation of policies/procedures that reflect best practice palliative care. There is a book distributed by the Aust Government “Guidelines for a Palliative Approach in Residential Aged Care” and I believe all facilities received a copy. If they don’t have one, why not? And if they do, why are they not using it as a reference? There are probably many reasons given for not providing gold standard palliative care, but none of them amount to an acceptable excuse!
Management systems & organisational development is required within the accreditation framework & is something that should constantly be evolving if we are to believe that we live in a civilised society.
Standard 1: Part of this category is that staff have the right skills and qualifications to perform their job. This should include Palliative Care to end of life in a facility as standard.
Standard 3 is ensuring ones dignity is upheld.
It appears that the accreditation standards may also need a facelift & be accountable for their lack of peripheral thinking with regard to dignity & implement a strategic plan on a continuous basis in order to achieve the highest level of care possible at a very crucial stage.
Both my husband and myself want to die at home and i will do all in my power to see that this happens if i am still on this earth to do so . We were both with my ex husband at his home until just before he died and it was lovely as all our children were there and we could all walk in and out as needed