Family Involvement in Care: Privacy, Consent and Mental Capacity

When a loved one receives care at home, it is natural for families to want to know how they are getting on. You might want an update after a difficult week, want to understand whether their needs have changed or simply want reassurance that Mum or Dad is okay.

But the person receiving care still has a right to privacy, choice and control over their own life.

This can sometimes create a difficult question for families: if you are closely involved in arranging or supporting someone's care, what information should you be able to receive?

And what happens if you have Lasting Power of Attorney? Does that automatically mean you can make decisions for your loved one or ask their care provider for information about their care?

In this episode of The Care Podcast, we explore the relationship between clients, their families and care providers, looking at consent, privacy, mental capacity, Lasting Power of Attorney and how decisions can be made while keeping the individual at the centre of their care.

Why can family involvement in care become complicated?

Families are often involved in care long before a professional care provider arrives.

A son or daughter may be the person who first notices that Mum is struggling. A husband or wife may help with medication, meals or appointments. Family members may research home care, contact providers and help arrange an assessment.

It can therefore feel natural to assume that the family will continue to be told everything once professional care begins. But there is an important distinction between being involved in someone's care and automatically having access to information about them.

If the person receiving care has the capacity to make their own decisions, their wishes must be taken into account. This includes decisions about who their care provider can speak to and what information they are comfortable sharing.

That can occasionally feel surprising, particularly if you were the person who initially contacted the care provider. But respecting someone's privacy does not become less important simply because they need support.

Can a care provider tell family members about someone's care?

As discussed in the podcast, consent is an important part of deciding what information can be shared. During the assessment and care planning process, a care provider can establish who the client is happy for them to speak to about their care.

For example, someone may be perfectly happy for their daughter to receive updates about changes to their care needs. Another person may want their son involved in certain conversations but prefer other information to remain private.

This means families should not necessarily assume that because they are someone's closest relative, they will automatically receive every detail. The starting point is always the individual.

Why is it helpful to agree this when care begins?

Clear conversations at the beginning can prevent confusion later.

As part of an assessment, it can be useful to establish:

• Who the client is happy for the care provider to speak to
• What information they are comfortable sharing
• Who should be contacted if something changes
• Which family members are involved in different aspects of their support
• Whether anyone has Lasting Power of Attorney
• How the client would like their family to be involved in care reviews

This gives the care team a clearer understanding of the person's wishes from the outset and can also help families understand their role.

Rather than everyone making assumptions about who should know what, there is an opportunity to discuss it openly with the person receiving care.

What is mental capacity?

Mental capacity is an important part of the conversation because it relates to whether somebody can make a particular decision for themselves.

One of the points discussed in the podcast is that capacity should not simply be thought of as something a person either has or does not have in every aspect of their life.

Instead, it relates to a particular decision. Someone may be able to decide what they want to eat for breakfast, what they want to wear or how they want to spend their afternoon. However, they may find a more complicated decision much harder to understand, weigh up and make, and that distinction is important.

This is especially relevant when supporting somebody living with dementia. A diagnosis of dementia does not, by itself, tell you whether somebody can or cannot make every decision about their life. The important question is whether they can make the particular decision being considered at that time.

What if you think your loved one is making the wrong decision?

This can be one of the most difficult parts for families, as you may understand what your parent wants but strongly disagree with them.

Perhaps Mum refuses something that you believe would make life easier. Maybe Dad makes a choice that you would not make in the same circumstances. The podcast makes an important distinction here: making a decision that other people consider unwise is not automatically the same as being unable to make that decision.

Adults make decisions that their families disagree with all the time and needing care does not mean somebody loses that freedom. Where a person has the capacity to make the decision, respecting their independence can sometimes mean accepting a choice that would not have been your choice for them.

Does having Lasting Power of Attorney mean you can make decisions straight away?

This is an area that can cause confusion. Someone may have arranged a Lasting Power of Attorney (LPA) because they want a trusted person to be able to support or make certain decisions if they are unable to do so themselves in the future.

But having an LPA in place does not simply remove the person's ability to make their own decisions.

As the podcast discusses, mental capacity remains central when considering whether somebody else needs to make a decision on the person's behalf. This is why it is important not to approach an LPA as though it automatically transfers control from one person to another.

If you are an attorney for somebody receiving care, it is worth making sure you understand the type of LPA in place, what authority it gives you and when that authority applies. If there is any uncertainty about a particular decision, appropriate professional or legal advice may be needed.

Why can Lasting Power of Attorney be misunderstood by families?

Often an LPA is arranged well in advance. A parent might appoint their son or daughter while they are still independently managing their own life because they want to plan for the possibility that they may need help in the future.

Years later, when care becomes necessary, the family may remember that the LPA exists and assume this means the attorney should now make decisions.

But receiving care and lacking capacity are not the same thing. Someone can need considerable practical support and still be able to express their wishes and make decisions about many aspects of their life.

This is why conversations about care should continue to involve the person themselves wherever possible. Our podcast with The Right Legal Group is a really good place to start when thinking about the legal side of care planning.

What happens when someone cannot make a particular decision?

There may be circumstances where it is determined that somebody does not have the capacity to make a particular decision, and at that point, the focus does not simply become 'what does the family want?'. Instead, the conversation needs to remain centred around the individual and what is in their best interests.

That can mean considering their previous wishes, values, beliefs, routines and preferences, alongside the views of the people involved in their care.  The question is not simply what is easiest for the family or care provider; it is about the person.

What is a best-interest decision?

A useful example discussed in the podcast involves a person living with dementia who had experienced episodes of walking with purpose and was going out during the night.

There were understandable concerns about safety. The person could potentially leave home at around four o'clock in the morning, without being appropriately dressed, and walk along country lanes.

It would have been possible to immediately think about a highly restrictive solution, but that was not the approach described in the episode. Instead, the people involved in the person's care considered what would keep them safe while placing the fewest unnecessary restrictions on their life. They also considered the person themselves: their history, values and what they would have wanted.

This is an important part of making decisions about somebody's care. Safety matters, but the solution should not automatically remove more independence than is necessary.

What does 'least restrictive' mean in care?

When somebody is at risk, there can be a temptation to jump straight to the option that appears to remove the risk completely.

The example given in the podcast is putting multiple locks on a front door, which, on the surface, may appear to solve the problem of someone leaving the house. But it is also highly restrictive.

A better starting question is, 'What is the least restrictive thing we can do that helps keep this person safe and achieves the outcome they need?'. That requires more thought.

It may also require input from different people involved in the person's care, including family members and relevant health or social care professionals.

How does this help preserve someone's dignity?

Dignity in care is not only about the way somebody is physically supported, it's also about how they are treated as a person.

Imagine that you have always made your own decisions and suddenly everyone begins discussing your life around you. Your children speak to the care provider. Decisions are made about what you should do. Information about you is shared. People begin deciding what is safe and what is not.

Even when everybody involved has good intentions, it could quickly feel as though you have lost control. Keeping the individual involved wherever possible helps avoid this as it recognises that the person receiving care is still the person whose life is being discussed.

What role should families have in care decisions?

Family involvement can be enormously valuable. A family member may know someone's history, routines and preferences better than anyone else. They may notice subtle changes and provide important context about what their loved one would usually want.

But being involved does not necessarily mean taking over. Where someone can express their own views and make their own decisions, the family's role may be to listen, support and help them communicate what matters.

Where a person cannot make a particular decision themselves, family members and others involved in their care can help build a picture of the individual's wishes, values and previous choices.

The distinction is subtle but important as it moves the conversation away from, “What do I think is best for Mum?" and towards, “Knowing Mum as I do, what would matter to her?”

Why are care reviews useful for families?

One of the practical suggestions at the end of the podcast is for family members to attend care reviews and care plan updates where appropriate and where the person receiving care is happy for them to be involved.

These conversations provide an opportunity for the client, family and care provider to talk together.

Families can hear directly about:

• How the person feels about their care
• What is working well
• Whether their needs have changed
• Whether they would like anything done differently
• Any changes being considered to their care plan
• What the person's current wishes and preferences are

It also means family members can hear the person's views for themselves rather than relying entirely on information being passed backwards and forwards. This can make communication clearer and help everyone understand their role.

What if family members disagree about someone's care?

Care can sometimes bring existing family differences to the surface. One sibling may believe Mum needs much more support. Another may think she should be left to make her own choices. A husband may have a different view from an adult child.

It can be tempting for these discussions to become about which family member is right. But the most useful way to bring the conversation back into focus is to return to the person receiving care:

• What does the person want?
• What decisions can they make themselves?
• What have they previously said is important to them?
• What are their values and preferences?
• Where a decision does need to be made on their behalf, what would best reflect their interests rather than the preferences of everybody around them?

Those questions will not necessarily make every disagreement disappear, but they give everyone a common starting point.

What if someone's needs or capacity change?

Care is not static. Someone's health may change. Their dementia may progress. They may recover from an illness or become more independent in a particular area. A decision that was straightforward six months ago may become more difficult, or the support they need may change.

This is one reason why care plans and family involvement should be reviewed rather than simply agreed once and forgotten.

It also means assumptions should be avoided. A person should not necessarily be treated as unable to make today's decision because they could not make a different decision previously. Likewise, families should feel able to raise concerns when they notice a meaningful change.

How can families and care providers communicate more comfortably?

The central message from this episode is the importance of clear communication. Families understandably want reassurance. Care providers need to understand who they can communicate with. And, most importantly, the person receiving care needs to know that their wishes and privacy will be respected.

It can help to discuss these things before a difficult situation arises.

The aim should not be to create a barrier between families and care providers. It is to make sure communication happens in a way that respects the person at the centre of it.

Privacy and family involvement do not have to compete

It can sometimes feel as though there are two opposing priorities: keeping the family informed and protecting the client's privacy. In practice, thoughtful care planning can help these things work together.

If everyone understands from the beginning who the client wants involved, what information can be shared and how the family can participate in reviews, there is much less room for confusion. And if circumstances change, those arrangements can be revisited.

The goal is not to exclude families. Families can play an important part in supporting somebody receiving care. It is about making sure involvement does not unintentionally take away the person's voice.

Good care should protect independence as well as safety

When somebody becomes more vulnerable, the natural instinct of the people who love them is often to protect them, but protection should not automatically mean removing choice.

Whether the conversation is about sharing information with a daughter, making a decision about someone's care or finding a way to reduce a safety risk, the individual should remain at the centre.

• What can they decide for themselves?
• What do they want?
• What matters to them?

And if they cannot make a particular decision, what approach best reflects their wishes, values and interests while restricting their freedom as little as possible?

Those questions can help families and care professionals make decisions that consider not only someone's safety, but their dignity and independence too.

Start the conversation while your loved one can tell you what they want

Families often begin thinking about issues such as mental capacity and Lasting Power of Attorney when a difficult decision has already arrived. Where possible, it can be helpful to have some of these conversations earlier.

Ask your loved one who they would want involved if they needed more support. Talk about what information they would be comfortable sharing. Ask what aspects of their independence matter most to them and what they would want family members to consider if they were ever unable to make a particular decision themselves.

You may never need to rely on some of those conversations, but understanding what matters to someone can make it easier to keep their voice at the centre of their care if circumstances change later.

Continuing the conversation

If you're navigating the care journey, you may find it helpful to explore more episodes of The Care Podcast, where families and care professionals speak honestly about the realities of care.

If you are thinking about support for yourself or someone you love, our team is here to talk things through. Helping families make sense of care is what we do.

You may also find our Care Advice Hub useful, where we share practical guidance for families at every stage of their care journey.