End-of-life care Archives - Care to be Different

Has your relative been ‘made’ incontinent and developed a pressure sore?

A Full assessment of your relative’s care needs is completed by the Clinical Commissioning Group’s assessors using the Decision Support Tool (DST).

The DST is a scoring ‘tool’ used at the MDT to build a picture of an individual’s health needs across the various Care Domains by reference to a description (otherwise known as a ‘descriptor’) as to what level of need constitutes a ‘Priority’, ‘Severe’, ‘High’, ‘Moderate’, ‘Low’ or ‘No needs’.

The DST consists of 12 headings or ‘Care Domains’, which are considered by the assessors in conjunction with your relative’s healthcare needs namely:

Behaviour
Cognition
Physical/emotional needs
Communication
Mobility
Nutrition (food and drink)
Continence
Skin integrity
Breathing
Drugs/medication/symptom control
Altered state of consciousness
Other significant care needs

You can access the updated version of the Decision Support Tool here:

https://www.gov.uk/government/publications/nhs-continuing-healthcare-decision-support-tool

See the table below which you will find set out in the DST:

Let’s now look at the Care Domains of Incontinence and Skin Integrity.

It may be alarming to hear, but some care facilities or local authorities probably find it easier (ie more commercially viable) to manage patients by ‘making’ them become or remain incontinent.

Understandably, neither the NHS nor Social Services have sufficient funding or staff availability to provide carers, 24 hours a day, for each needy individual. So, due to a lack of resources, some patients are being left in the incontinence wear provided to wait for next change – which could be some hours later.

We were contacted by a lady who visited her sick husband every day whilst he was a resident in a luxury care home, but one day she couldn’t get to see him until late in the evening. When she arrived, she was distressed and angry to find her dear husband had been left sitting in his waste all day long, unchanged. How often does this happen when family aren’t around to observe how their spouse or relative is being cared for?

Incontinence products and pads are designed to contain waste matter, but for a limited period. But, too often, a shortage of staff and budgets can mean only a specific number of prescribed checks or changes of a patient’s incontinence wear in a day. A patient may be changed, but a few minutes later have an accident, and then be left for long periods, in discomfort, until the next check/change. Sadly, some organisations and care facilities might be inclined to think that it is far cheaper to leave an incontinent patient lying or sitting in their waste, than to employ more staff to deal to carry out more frequent checks and pad changes.

Less mobile patients may need a number of carers to help them with transfers for toileting which can be quite time-consuming. In the meantime, other needy patients who require attention might be neglected. Another reason why a care facility may feel it’s easier to let a patient become incontinent.

Being ‘made’ incontinent deprives an individual of their dignity, causes embarrassment and distress, which could be avoided.

Is it ever acceptable to make someone incontinent?

Patients who cannot communicate their needs are likely to go for longer periods unchecked (unless someone notices an odour). Incontinence can lead to urinary tract infections (UTI’s) and catheterisation – both very unpleasant and uncomfortable for the patient.

Worse still, less frequent changes of incontinence products can lead to the skin becoming moist, wet or soggy. This in turn can cause skin damage leading to moisture lesions and pressure sores. Pressure sores, sometimes known as pressure ulcers or bed sores, can develop very quickly if skin integrity is not closely monitored.

Pressure sores are caused by neglect and are entirely avoidable!

For some experienced nurses, the mere mention of a pressure sore is equivalent to a ‘swear word’, as they are totally preventable with good care.

Deep pressure sores can be agonisingly painful, making it uncomfortable for the patient to move. The area may be red and inflamed, weeping or bleeding. Patients have described pressures sores feeling like a ‘hot burning sensation’.

Why should anyone who is incontinent be allowed to develop a pressure sore?

Whether in a hospital, care home setting or at home, if pressure sores are not monitored and managed swiftly, they can very quickly deteriorate and become extremely difficult to treat successfully; sometimes causing significant deep-tissue cavity damage that goes down to the tendon, muscle and bone. The most serious cases of deep infection can result in loss of limb or prove fatal.

Pressure sores commonly occur on bony prominences eg shoulders, elbows, knees, buttocks, ankles and heels.

Pressure sores are graded in severity:

Grade 1: Non-blanching erythema. When lightly pigmented intact skin is pressed for a few seconds it remains red. This is harder to see on darker skin tones.

Grade 2: There is damage to the top layer of skin

Grade 3: Skin damage spreads to the fatty layers under the skin causing a shallow cavity (ulcer)

Grade 4: A deep cavity that goes down to bone (muscles or tendons), often accompanied by a foul smell (like rotting flesh) and can be fatal.

Pressure sore prevention is an essential aspect of patient safety

Pressure sores can develop in a matter of hours if not identified and acted upon.

However, they can be prevented with proper risk assessment and regular monitoring.

Some patients will inevitably be at higher risk than others – perhaps due to their advancing age, inherent frailty, disability or immobility (eg following surgery). Patients who are wheelchair or bed bound, or else sit or lie in one position for extended periods of time are at greatest risk.

Having good systems for detecting the risk of pressure sores developing is essential. Staff should look out for pain, itching, discoloration, numbness, heat or hardness of skin.

Monitoring the patient closely and having more frequent and regular thorough inspections should quickly identify damage (or vulnerable areas) sooner.

Using assessment tools such as the Waterlow scale will identify those patients most likely to be at risk of developing a pressure sore.

Basic repositioning (or turning) a patient can alleviate the occurrence of a pressure sore developing.

Staff and cares need better training and awareness of prevention strategies. They need to be alert and be able to identify patients at risk and take rapid and timely intervention, such as repositioning the patient, or providing a pressure relieving mattress or cushion, to prevent the development of a pressure sore or its deterioration. Early intervention can reverse a Grade 1 pressure sore, but left unattended can result in serious complications which may become irreversible and lead to life-threatening complications.

Being at ‘end of life’ and not eating or drinking is still no excuse to allow a pressure sore to develop. Skin integrity is paramount. Skin should be kept free of damage at all times.

For more information, read our helpful articles relating to pressure sores:

The dangers of pressure sores, pressure ulcers and bed sores

Take a holistic approach to improve your chances of getting CHC Funding

What preventions are in place to look after your relative? Do they have an ‘S SKIN’ Bundle?

A care bundle “is a collection of interventions that may be applied to manage a particular condition or as a preventative measure to reduce the risks of developing complications.” Hospitals and care home should have a policy to adopt the ‘S SKIN’ bundle.

The S Skin Bundle Consists of 5 key elements for skin protection, namely:

Skin Inspection/assessment
Surface
Keep Moving (Repositioning)
Incontinence / Moisture
Nutrition and Hydration

Care bundles can be divided into 2 categories – one bundle is for prevention, and the other for treatment.

The prevention bundle is used when the patient is assessed at being at risk, following the use of a recognised risk assessment tool and requires a prevention plan to be in place.

The treatment bundle must be used when the patient has at least one pressure sore.

S SKIN pressure ulcer care bundle – prevention

Many practitioners will use the S SKIN bundle to check for compliance against the 5 key elements:

Skin Inspection: Staff should check the skin and ensure its management e.g. using blanching techniques – pressing the vulnerable area with the thumb and forefinger for 2 seconds and releasing. If the area remains red, that indicates damage to the capillaries. The patient will need repositioning and the matter should be noted and reported immediately.

Ideally, the patient should have a ‘touch’ test each time they are seen by staff.

Surface: Staff should check how the patient is sitting, sleeping or lying and whether pressure relieving equipment, such as special mattresses or cushions, are required and to check they are working effectively.

Keep Moving: Staff should check and ensure that the patient is frequently mobilizing eg getting up at regular intervals to prevent skin sheering and undue pressure on vulnerable areas. Or, if not possible, the patient has a repositioning schedule/chart in place and to initiate frequent repositioning as required.

Incontinence/Moisture: Staff should keep the patient dry and clean and check that the skin is protected from moisture damage. Moisture on the skin is usually caused by incontinence of urine/bowels or sweat. Vulnerable areas, such as the buttocks, that become moist, wet or soggy are more likely to cause skin breakdown and lead to pressure sores developing. Staff should take preventative measures and ensure appropriate steps are taken to reduce the risk eg applying barrier creams.

Nutrition/Hydration: Staff should check and ensure that nutritional assessments eg the MUST Tool (Malnutrition Universal Screening Tool) is being used and completed to monitor diet and fluid intake, and appropriate instructions are being given to carers.

Tip: If you have any concerns about your relative’s skin integrity, we recommend that you check their care home records and see that this essential tool is being actioned.

Summary

The S SKIN care bundle forms part of the patient’s records and should be used in conjunction with their own care plan. Check your relative’s care records regularly to ensure it is included and updated.

Pressure sores usually develop as a result of poor basic staff awareness and training, poor risk assessment and ongoing regular checks and assessments, and monitoring.

We have created our own mnemonic for good pressure sore care – ‘PAM’.

Prevent Assess Manage

If your relative has developed a pressure sore we suggest seeking specialist legal advice as they may be entitled to claim for the suffering and pain caused by neglect.

For further reading around the subject, read these blogs:

Why is it important to check your relative’s care home records?

June’s feature on flawed CHC assessments and the importance of good record keeping.

December 11, 2019/5 Comments/by Care To Be Different

End-of-life care

Are you being charged for end-of-life care?

Thousands of elderly people are wrongly charged for end-of-life care

Sally-Ann Marciano

Accessing end-of-life care can be a battle for many families, and of course this usually comes at a time of great emotional turmoil and sadness.

Sally-Ann Marciano describes the ordeal she and her mother went through to get her father assessed for NHS funding and to get proper care in place when he was dying. She’s not alone in finding that the ‘system’ let her down – very badly – and her story will resonate with many.

What she and her family went through is appalling, and it’s inexcusable that proper end-of-life care is still so difficult to access. Sally-Ann is also not alone in experiencing what now often seems routine on the part of the health and social care authorities in telling someone their care needs are just ‘social’ care needs (means tested), when anyone with an ounce of sense and knowledge can see they are health needs that should be funded by the NHS.

As in Sally-Ann’s case, many families are also told they ‘won’t get funding’ before an assessment has even taken place, and many assessors do not even know the person being assessed, or have any meaningful understanding of their health needs. Families are also often excluded from assessments, even though they should be involved right at the heart of the process.

Sally-Ann comments:

“It is so wrong. Our parents have contributed so much to society, and they deserve a dignified end to their life. As I tell many people, you have no second chance with end-of-life care. It has to be right first time, every time.”

You can read Sally-Ann’s moving story here

June 24, 2013/31 Comments/by Care To Be Different

End-of-life care

Where is the NHS in elderly care?

“My father died aged 78. He had been ill for a long time with Parkinson’s Disease and dementia, and he was in a nursing home. He could no longer speak and his movement was severely restricted.

About 18 months before he died I went with him to a routine hospital appointment to see his usual neurologist. During the appointment my father was unexpectedly told he also had terminal kidney cancer and that there would be no medical intervention. In other words, he was going to die.

He was told that the cancer specialist would be in touch to tell him more – and that there was no point having any more neurology appointments.

In tears, we were both immediately taken back to sit in acrowded waiting room and wait for the wheelchair transport to take us back to the nursing home. After a couple of minutes, a nurse bustled past and exclaimed loudly, “Whatever’s the matter?”

Where is the care in elderly care?

Six weeks after that appointment we’d heard nothing from the hospital. On making enquiries as to why, the consultant said that because my father was old and frail, there was “no point dragging him in to explain the bad news to him”.

How arrogant of the consultant to make that decision on my father’s behalf – and to not even bother telling him. I wonder if that oncologist has ever been told he’s going to die, but that no one thinks it’s worth talking about.

There was no information. And even if there was ‘nothing they could do’, could they not at least have had the courtesy to explain things properly?

My father was not even asked if he wanted to know how much time they thought he’d got left or how the disease would progress towards the end. And, of course, there was not a hope in hell he’d be given any advice on nutrition to help sustain him in the meantime.

And here’s the real nub of the issue in my view:

I suspect if my father had been younger – and not in a care home – he would have been treated quite differently.

There was no follow-up, no district nurse and no regard at all for his emotional wellbeing. Dad must have been terrified.

If he’d been at home, someone would have gone in to see him. And yet his needs were no different simply because he was in a nursing home and, I suspect, because he was being forced to pay for care himself.

The void into which elderly people fall can be very dark. And when you’re in a care home, it’s even worse. You can slip through many gaps. My father had been discarded by the hospital and, because he was in a care home, he was also off the radar much of the time as far as the wider NHS was concerned.

I was not angry that my father had cancer. I was not angry that he was going to die. I could accept that because he had been ill with other things for so, so long.

But where was the NHS in all this?? Where was the NHS palliative cancer ‘care’? Where was all the ‘good work’ that the NHS spends millions of pounds talking about in documents and glossy brochures? Where was the end-of-life strategy in action?

When you’re old and in a nursing home, as my father was, you can become invisible. He’d been there for three years. Aside from the individual staff at the home, who were kind, few other NHS ‘health’ professionals ever crossed the threshold to see him.

Until I challenged the NHS about care fees, the nursing home had cost my father tens of thousands of pounds. He paid all that himself from the sale of his home because the NHS had refused to help. And now it seemed the NHS was taking advantage and not acting – because he was in a care home.”

July 18, 2010/4 Comments/by Care To Be Different

End-of-life care

If you’re at the end of your life, you may not want any medical intervention. It’s your choice.

With health professionals sometimes wanting to preserve life as long as possible, the term ‘end-of-life’ care can sometimes seem a contradiction.

And if it’s your parent or relative who is dying, you may find you become the buffer between what the care team want and what you know your relative would want.

Empathising with the dying person, understanding what they really want and need and showing compassion for their choices can go such a long way in helping someone in the very last stages of their life.

There are however various practical things to consider. The following information may help prepare you for some of the issues that can arise.

The end-of-life ‘industry’

When you’re dying you often receive more attention than you ever did before. This seems to be particularly the case with cancer, even though other diseases are just as distressing.

Death can become a ‘medical process’. The paraphernalia, drugs and other interventions (albeit mostly well-intentioned) that a terminal illness seems to attract can sometimes impose on – and destroy – the natural process of dying.

You may decide you don’t want a lot of medical intervention. It’s your choice and you can say so. If you’re still able to make decisions for yourself, and you wish to put that choice in writing for the time ahead, you may be able to draw up a Living Will or a Health & Welfare Power of Attorney.

Communication and choice

If it’s your parent or relative in a care home at the end of their life, it’s really important that you and the care home are in close communication – on a daily basis, if necessary – about what care is being provided.

If your relative is unable to make decisions, you can express your wishes for that person to their GP and to the care home’s nursing team or the palliative care team. For example, you may not want feeding tubes inserted or any invasive treatment, and you may not want your parent/relative to go into hospital.

If you have a Lasting Power of Attorney covering the health and welfare of the person who is dying, you may have more influence in this respect. A compassionate GP and care team may well take your wishes into account anyway, without you having a Power of Attorney, but there’s no guarantee.

A care provider may be keen to keep feeding your relative, even if your relative doesn’t want to eat. The care provider may also be keen for you to agree to your relative having a feeding tube. Care providers can be vulnerable in this respect, because a family could easily sue them afterwards, claiming they didn’t do enough. That’s why it’s a good idea to put your wishes in writing, so that the care team feels it has some protection and so that it’s clear what you do and don’t want.

Hospice care

There are some good end-of-life care services available. However, some care home residents find they don’t have access to all services. This may include the valuable help offered by MacMillan Cancer Support or Marie Curie. This could be because of a decision made by the care home, or because the various care organisations consider that care home residents are already receiving appropriate care.

Hospices offer a range of therapeutic services but, if you want to access them, a hospice will often require you to travel there yourself. However, that may not be possible for you at this stage of your life – and, also, transport facilities at many care home could be be limited.

You may find you’re not able to stay at the hospice for any length of time either – again, because you’re in a care home. People who are still having to pay full care fees at this point can find this rather unfair.

However, the care home or your GP may indeed ask a hospice nurse to come in and visit you in a care home – to advise on things such as pain relief. These drugs can still be invasive, though, and may affect your clarity of thought and your interaction with those you love towards the end of your life. You have every right to refuse medication.

Nutrition

It’s not unusual for GPs, nursing staff and hospice staff to say that a person at the end of their life can eat whatever they like – even if it’s completely devoid of nutrients. The rationale is that it doesn’t matter any more. And it is, of course, a choice for the person concerned.

However, if someone has limited time left and wants to feel as well and as lucid as possible during that time, it’s vital that they receive energising nutrients and good hydration. In fact, having a high-nutrient diet can extend the time you have left.

Sadly, it’s common for care home food to be low in therapeutic nutrients. This is the ‘norm’ – and yet nutritional supplements often have to have the ‘approval’ of a GP. GPs, however, generally have very little, if any, training in nutrition.

If you’re visiting an elderly relative in a care home and you’re bringing in additional high-nutrient foods/supplements, you may find an understanding member of the care team who is willing to help your relative with these.

Resuscitation

As the relative of someone in care, you may be asked to complete a ‘Do Not Resuscitate’ form (DNR). This is where you indicate whether your relative should be resuscitated if/when they become unconscious.

You can express your wishes in the way you know is right for the person you love. It can be very hard emotionally, but it’s important to make everything clear in advance.

NHS Continuing Care

If you’re in a care home and receiving NHS Continuing Healthcare, there’s a chance the NHS could take away your funding as you reach the last stage of your life. In such a case, the NHS will say that you no longer need nursing care and that, to be blunt, you simply need personal care until you die.

This can be devastating news to receive – on so many levels.

Your family may want to challenge that decision immediately. Be aware, though, of the added emotional strain this may put on everyone. As a family member, maintaining a balance between fighting for what you believe to be right and spending time with the person who is dying, while you still can, is important.

Wills

If you’re at the end of your life and you can still make decisions for yourself, make sure your Will is up to date. If it’s not, arrange for a solicitor to visit you as soon as possible to get it updated.

If it’s your relative who is at the end of their life and they can no longer make decisions for themselves, then unfortunately it will no longer be possible for them to make or update a Will. However, in certain circumstances it may be possible for a statutory Will to be drawn up. Read more about Wills.

Government end-of-life care strategy

According to the Dept of Health’s document, Supporting People With Long-Term Conditions, good end of life care:

“…should attend to the needs of the whole person and those who are important to them. People approaching the end of life should reasonably expect that their care will be pre-planned wherever possible; well co-ordinated; equitable; and ethical with regard to preferences and personal beliefs.

“Involving the person and their carer in planning and agreeing a care plan, which identifies the needs and preferences for care at the end of life, ensures that they remain in control. This is fundamental to retaining a person’s dignity at a time when they are likely to be feeling at their most vulnerable.

“End of life care is also an area where there is input from a range of care providers, from Healthcare, Social Care and the voluntary sector, and it is equally important to ensure that these services are well co-ordinated.”

You can read more here about end of life care: NHS Choices – end of life care

July 18, 2010/9 Comments/by Care To Be Different