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, 2013/29 Comments/by CTBD

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 CTBD

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 CTBD