Tackling consent: Keeping control if your relative lacks mental capacity

Please note: This article was published prior to July 2022, and some information may be outdated.

How often do care homes tell family members things along the following lines…?

“Sorry, we can’t give your relative that …”

“Without authority, we can only administer this…”

“We will need formal authority first before we can take instructions from you about your relative’s care needs…”

“We can’t allow you access to your relative’s notes and records or release copies to you without proper authority…”

Patients who lack mental capacity will need someone to speak for them and act in their best interests to ensure that they are looked after, kept safe from harm and get the proper care and attention that they need when they can’t communicate their needs themselves.

Mental Capacity

‘Mental Capacity’ means the ability to make a specific decision at the time it needs to be made. A person with mental capacity has at least a general understanding of:

the decision they need to make;
why they need to make it;
any information relevant to the decision;
what is likely to happen when they make it.

They should be able to communicate their decision through speech, signs, gestures, or in other ways.

Tackling consent: Keeping control if your relative lacks mental capacity

Mental capacity can be impaired in many ways. For example, if an individual has suffered a life-changing event such as a catastrophic stroke, or sustained a severe brain injury following an accident, or developed Dementia, Alzheimer’s or other cognitive impairment.

Patients lacking mental capacity and the ability to make a specific decision or to consent to something, are in a vulnerable position and need protecting for their own safety and from coming to harm (and sometimes, for the safety of others).

If an individual lacks mental capacity and cannot provide informed consent to treatment or other aspects of daily living then they will need to have someone make decisions on their behalf and act in their best interests. That could be a relative, friend, carer or appointed professional (or Deputy appointed by a Court).

Cognition and mental capacity – what’s the difference?

Mental Capacity Assessments – when should you have one?

Avoiding conflict with the care home

As a close relative who has been looking after a spouse, parent or child, visiting and attending to them on a daily basis whilst in a care/nursing home environment, you may feel an absolute entitlement to give instructions or make decisions in relation to their daily healthcare and social needs.

However, what you consider to be in your relative’s best interests, for example, how they like to be dressed, fed or cared for, may conflict with the care home’s own regime or protocol for providing care, care practices or policy directives.

Sometimes, your personal requirements, requests or desires might be refused by care home staff. This can lead to conflict and arguments with the care staff, usually borne out of sheer frustration, as you may feel that you know your relative best, can interpret their needs, and understand or know what they want or what is best for them.

Don’t assume because you’re a carer or close relative that you have automatic entitlement and authority to make decisions for your relative. Some care homes are more accommodating and will, of course, listen to family members and take on board what they want whilst caring for their relative. However, to avoid conflict and take control of decision-making for your relative you need to have legal authority.

Let’s explore the different options available:

Lasting Power of Attorney (LPA)

When caring for a living relative, a Lasting Power of Attorney gives you control over their health and welfare and/or property and financial affairs. Without a valid Power of Attorney in place, you may be powerless to make such relevant and critical decisions on their behalf.

The LPA has to be made whilst your relative still has mental capacity. It is too late once they have lost capacity, and instead, alternative means of authority will be needed, which may be more problematical. See below.

Under the LPA, decision-making is effectively transferred to the appointed Attorney who can make essential decisions about their relative’s health and welfare, and/or property and financial matters quickly, as if their relative were making those decisions for themselves. The LPA protects their financial and health interests at a time when they can’t do so reliably themselves and ensures that their appointed representative (Attorney) will act in their best interests at all times.

Otherwise, without LPA authority, you will have to undergo a lengthy and expensive application to the Court of Protection to seek a Deputyship Order. In the meantime, there can be a frustrating delay, causing anxiety and conflict, whilst you may be lawfully prevented from taking critical decisions in your relative’s best interests.

An LPA automatically ceases on death. So, the Executors appointed under the Will, will then need to apply to the Probate Registry for a Grant of Probate. The Grant gives them authority and power to continue acting and making decisions on behalf of their deceased relative’s estate.

For more information, you will find these articles helpful:

Why you should consider making Lasting Power of Attorney or a Will

Lasting Power of Attorney: 4 ways to start the conversation

‘Best interests’ argument

If your relative lacks mental capacity and you don’t have any specific legal authority to act, eg under a Lasting Power of Attorney, then the fall-back position is to argue that you are acting in your relative’s ‘best interests’.

Argue that the care home should consult with family (and friends or medical practitioners) who have a genuine interest in your relative’s health and welfare. Insist that your views and wishes are taken into consideration in any decision-making process and that the care home are acting in your relative’s best interests, not their own.

Remember, acting in ‘best interests’ is not as authoritative as acting under a Lasting Power of Attorney.

Deprivation of Liberty Safeguards (DOLS)

What can you do if your relative is deprived of their liberty?

Deprivation of Liberty is a legal procedure that provides extra protection and safeguards for vulnerable individuals, in hospital or resident in a care home, who lack mental capacity, and whose liberty is being deprived in contravention of their Human Rights.

Deprivation of Liberty means keeping or restraining an individual in a secure environment, not allowing them freedom to go anywhere without permission or close supervision or keeping them under constant supervision. One has to consider whether deprivation of liberty is in the individual’s best interests, necessary to prevent them from coming to harm, and a proportionate response to the likelihood of them suffering harm?

If your relative is deprived of their liberty, they must have a Relevant Person’s Representative (RPR) acting for them to protect their interests.

An RPR is usually a friend or family member, as they will inevitably know the individual best, and will be more committed to ensuring that their rights are being properly safeguarded.

The RPR is trusted to act in the person’s best interests

In the event that there is no family member or friend able or willing to undertake the role of RPR, the Local Authority will appoint a paid representative, who has to be 18 years or older, is able to keep in contact with the relevant person, and who is willing to take on the responsibilities of the appointment.

As part of the RPR’s duties, their authority will usually include some of the following responsibilities, to name a few:

Protecting the individual’s interest throughout the DOLS process; maintaining face-to-face contact with the individual being deprived of their liberty, and generally representing and supporting them; obtaining information about the relevant person’s care or treatment; making decisions in the individual’s best interests – taking into consideration any wishes or feelings they may have previously expressed, and any religious beliefs, cultural background or moral views, which may influence the RPR’s decision making; consulting widely with the individual’s Attorney (under a Lasting Power of Attorney) or Deputy (if appointed by the Court of Protection), or indeed anyone else involved in the individual’s care, or who has an interest in their welfare – to ensure all decisions are made in their best interests.

For more information, read: Using legislation to safeguard your relative in care – Deprivation of Liberty Safeguards (DOLS)

Tagged Categories: CHC funding, Health and nutrition, Health Conditions, NHS Continuing Healthcare

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7 Comments

Jenny January 23, 2020 at 1:15 pm

That's interesting. Do they remove PIP if you manage to get CHC and are cared for at home? Attendance Allowance stops if you receive CHC and are in a care home - I assume because the state is paying for all care and health needs.

Mrs P Haste January 22, 2020 at 9:10 pm

I have been trying to get the Court of Protection to sort out my claim for a Deputy for the last 2years 4months as my husband has got Dementia/Prostate Cancer. I keep getting the forms back saying this is not right and I need to get more information. The last time was a week ago when I was informed that they had not had the forms that I had sent by recorded delivery and that I would have to get the person to write the document again. Doctors surgery's do not want to know about filling in court papers.

Brian Ford January 23, 2020 at 10:03 am

Hello Mrs Haste
Sorry to hear your plight. I am a retired engineer and interested in the way the COP work these days.

IMO - You need to request specifically what it is that is missing from the forms that is preventing their due process, 'its not right' is unacceptable as you have a right to be informed properly about the way they want for the forms to be completed properly. Get your GP to provide any advice or pertinent medical notes.

As for losing these documents, this is a very serious matter and under GDPR you are now protected. From May 2018 it is illegal to leak personal information, so losing documents shows an overly casual regard for your documents and is a serious matter, and as with any company they must be fully compliant. If they have lost your documents and they were sent recorded, you now need to obtain the certificate of posting from the post office as evidence of posting and to progress in advising the COP of the new GDPR legislation, and their data protection responsibilities to you.
Use the link below to download the white paper, be informed, and importantly let the COP know you are!
https://learn.pluralsight.com/resource/offers/2019/gdpr-compliance?oid=7010a000001xF2tAAE&utm_term=&aid=7010a000002ph40AAA&promo=&utm_source=non_branded&utm_medium=digital_paid_search_bing&utm_campaign=Bing_B2B_EMEA_Content_GDPR-Compliance_BMM&utm_content=&msclkid=d1903ca62b9217db6ca2628f4d185b7f

Graham Spencer January 22, 2020 at 6:37 pm

From experience, we have three severely disabled adult Sons, none have mental capacity, they all live at home with me, my wife and our youngest son, now 24 years old. We are C.O.P Deputies to all three disabled sons. We undertook our deputyships thinking we could stand up for our son's future, however, the reality is quite different. CCG/CHC's often ignore te orders, mainly on ignorance, we have the "Health & Welfare" orders which are very difficult to actually obtain, so we were lucky in that respect. Care agencies tend to completely shut you out of their lives (we are having this problem at the moment, the Agency is making care plans without our input or authority and then telling us how our boys should be cared for, having known them only 5 minutes, that is an insult, trust me).
The worst problem is when we have a hospital situation, we always take a copy of our order to the hospital for their records, yet each time one of them is admitted, surprise surprise, no record of any court order can ever be found. As Parents, we have had to find out, only by pure chance that one of our sons, whilst admitted into hospital, had an invasive procedure carried out involving puncturing the stomach and bowel, without any pain relief, all because an agency carer was sitting in with him, had never met him, yet had the authority to state that "in her opinion, we were not in any pain".
If you are thinking of applying for a deputyship order, please bear in mind the price involved is steep, ours were over £2000 person and the advantages for us, very little with barely any authority, in some areas, the orders made matters worse as it automatically puts professionals on the back foot.

Mr R Dickinson January 22, 2020 at 4:13 pm

"NHS Continuing Healthcare Funding ('CHC') is a fully-funded package of free care paid by the NHS for an individual's healthcare needs, including accommodation, regardless of where the care takes place (eg in their own home or in a care/nursing home) and irrespective of wealth (i.e. is not means tested).

DWP will cease to make Personal Independence Payments once a person is in a Care Home funded by the Health Authority NHS CHC.

Jenny January 17, 2020 at 2:30 pm

Once again an excellent and clear article. Always get LPAs done. However, be prepared for care home staff, nurses at all levels, GPs and GP staff to have absolutely no idea what this implies. I was regularly ignored, over ruled, offered a Best Interest meeting instead. Even a week before relative died I was asked by GP staff if he could write a letter to say I could request his records and what I wanted them for. Meanwhile, relative was frequently asked to consent to procedures, or told it would be good for him to have certain medication - even if it had been declined in writing by Attorney for specific reasons. This confusion still continued after a full psych assessment in which it was found relative could make no decisions beyond the sugar in tea level. There is a serious and dangerous level of ignorance around these topics among the caring professions.

Please also note that if the care home has locked doors your relative should be informed of DOLS. Similarly, I gather that if a person is subject to a DOLS order there may be delay in certifying death and releasing the body while the reasons for this are investigated. It may also be worth considering whether your relative needs DOLS if they are not independently mobile and is incapable of making a call to be collected and removed from the facility.

Pat Harden July 17, 2022 at 1:37 pm

Jenny the last bit you put if have a dols in place there may be a delay in certifying the death . it used to be if have a DOLS in place then all deaths had to go to the coroner . THIS HAS NOW BEEN REMOVED . hope this helps some one .