Dying to Know
A Guide to Planning for the Last Chapter of Life
Who Am I and Why Does This Matter?
For over three decades, I have worked as a financial adviser. Qualified, experienced. Committed to helping people understand their financial lives. For the last twelve years, some of that commitment has taken shape through a project called Money Trainers, bringing financial education to those who want it.
More recently, my focus has shifted to something broader, something more urgent, and something that most of us would rather not think about until it is too late.
That something is the programme I call Dying to Know.
Dying to Know began as a series of workshops delivered three or four times a year in full-day group sessions and has since evolved into an online programme of lessons and sessions.
These were always run with Judy Sharp, who advised on and taught the spiritual section of these courses, including questions such as what it means to die and what happens to the soul, among other topics.
Of late, Judy has been diagnosed with terminal cancer. This essay has been brought forward because of that. All of her ducks have been arranged in a very organised little line, which has made some of what has arrived over the last few months much easier to deal with. Even we practitioners do take our own advice.
What Is Dying to Know?
It is a short course, to make us aware and to help us understand the implications, the practicalities, and the decisions we will all need to make and to highlight things we should have in place as we approach the final chapter of our lives. Specifically, it focuses on planning for what I call the last ten years.
The whole idea is to bring together the legal and the practical stuff within a neat little ‘take action’ bundle. The Lunch Time Sessions are a cut down version - designed to cover many of the issues - in a lunchtime.
None of us know when those last ten years begin.
That is the point.
Which is why it is so important that we plan and understand these things before we need them.
The focus is on the two ages of life that are most important. My term pre-Zimmer and post-Zimmer and then of course the final ending.
Post-Zimmer refers to life after a significant disabling event a stroke, a heart attack, the loss of a limb, the onset of dementia. These are the events that fundamentally alter how we live and how we are cared for.
Pre-Zimmer is the period between retirement and before post- Zimmer. A time when we may be managing blood pressure, taking statins, being told to exercise more or lose a little weight.
We are not incapacitated, but the signals are there. Pre-Zimmer might look like cruises and walks in the park; post-Zimmer might look like daytime television and depending on others for basic needs.
These two stages pre and post-Zimmer form the heart of what Dying to Know addresses.
Why I Run These Courses - A Personal Story
Dying to Know did not come from theory. It grew out of what our family lived through between 2011 and 2014, when both my mother-in-law and father-in-law entered post-Zimmer life, moved into care, and ultimately passed away.
It also brings together something I had always done with clients - a rehearsal. Talking about the ‘what happens when’ because we know there is always a when!
My father-in-law had suffered a significant stroke just before retirement, at the age of 64 though the underlying conditions had been present for nearly twenty years prior. The stroke caused him to lose movement down his left side, he could not walk properly, could not cook for himself, and could not exercise.
To be fair he couldn’t really cook before his stroke, but after there was no chance.
In many ways, he was already living a post-Zimmer life long before most would expect it.
My mother-in-law, who passed away from COPD, spent her final years largely sedentary, overweight, watching daytime television, and increasingly disconnected from a “normal life”.
After several years of what I can only describe as existing rather than living, she suffered a series of massive strokes. They did not take her life, but they left her a shell of her former self.
What followed for our family was years of navigating an overwhelming and often poorly coordinated system - medical, legal, financial, and emotional on behalf of two people who were no longer able to fully manage their own affairs, yet who remained their own decision-making authorities.
It was bloody exhausting, complicated, and at times, deeply distressing.
Neither of them had a Power of Attorney in place. My father-in-law had actively rejected a Do Not Resuscitate notice, telling a nurse he wanted all available treatment without fully understanding what that could mean in practice, including the possibility of surviving another major stroke with severe, life-limiting disabilities.
The conversations we needed to have about resuscitation, about comfort, about what a good end of life actually looks like were ones nobody had prepared us for. For me, tending to be honest and ‘real’ over these things - working with other family members was hard.
Rose coloured glasses were in oversupply on most days.
On top of the medical complexity, there was the daily practical reality: shopping, cleaning, bill payments, banking, pension management, social care, GP visits, hospital admissions, and the involvement of social workers who were, through no real fault of their own, overwhelmed and inconsistent.
Notes went missing. Crucial details were not recorded. On-call GPs who did not know our family asked what, exactly, we were asking them to do when we simply wanted our loved ones to be more comfortable.
Sure, that may not be your experience but it most certainly was ours - and from what I have learned over the last ten years, much the same all over the country.
This is not about trying to make individuals look bad, but the system sucks.
Across modern society, families are navigating exactly these challenges often unprepared, often alone, and often in the middle of a crisis, having accepted the tenth phone call of the day asking when the shopping will arrive!
What This Programme Offers
Dying to Know exists because preparation matters. The sessions are designed to help you think through the practical, financial, legal, and emotional dimensions of later life before you are in the middle of it.
As they apply to you and your circumstances.
To help you understand what questions to ask, what documents to have in place, and what decisions to make while you still have the clarity and the time to make them.
This is not a morbid exercise.
It is an act of care for yourself, for your direct family and for the people who love you.
Living Wills & Do Not Resuscitate Notices
What Is a Living Will?
A Living Will formally known in the UK as an Advance Decision to Refuse Treatment (ADRT). It is a legal document that sets out your wishes regarding some urgent medical treatment (ADRT) in the event that you are no longer able to communicate or make decisions for yourself. It is, in essence, your voice when you no longer have one.
It is one of the most important documents you will ever sign, and one of the least talked about.
A living will is an Advance Directive.
It allows you to ‘give direction’ about your medical care ‘in advance’ of you needing it.
A Living Will allows you to specify which treatments you do and do not want, including life-sustaining treatment should you lose the capacity to decide.
It can cover decisions about resuscitation, ventilation, artificial nutrition, and the use of antibiotics to prolong life. Crucially, a properly completed and legally valid Living Will is binding on medical professionals.
They must follow it.
The key word there is valid. A Living Will must be written and signed while you have full mental capacity, witnessed correctly, and kept somewhere accessible. Registered with your GP, held by your next of kin, and flagged on your medical records. A document sitting in a drawer at home, unknown to the people who need it, is a document that cannot help you.
What Is a Do Not Resuscitate Notice?
A Do Not Resuscitate notice commonly referred to as a DNR, or more recently a DNACPR (Do Not Attempt Cardiopulmonary Resuscitation).
It is a specific medical instruction that tells healthcare professionals not to attempt to restart your heart or breathing if either stops.
It is not a decision to end your life. It is a decision about how you wish to die, should that moment arrive naturally.
This is a distinction that many people and many families struggle to understand, and it is one that causes enormous pain and conflict at the most vulnerable of moments.
The instinct to fight, to do everything possible, to never give up on someone we love, is human.
But it is worth understanding what resuscitation actually involves, and what it can and cannot achieve.
CPR, performed properly, involves significant physical force repeated chest compressions that frequently break ribs, particularly in elderly or frail patients.
Even when it is successful in restarting the bits that have stopped -the heart, the outcome is not always a return to the life that existed before.
In older patients with existing health conditions, successful resuscitation can result in severe brain damage, additional organ failure, or a level of disability far beyond what was present beforehand.
The person who wakes up if they wake up may be in a significantly worse condition than the one who went into cardiac arrest.
My father-in-law’s story illustrates this painfully well. He rejected the DNR that had been put in place, telling a nurse he wanted every available treatment.
That was his right. But he had not truly thought through what that meant what he was consenting to, and what he might be waking up to on the other side of it.
The conversations that should have happened long beforehand in a calm, informed, unhurried never did. It was only when my wife and I sat down and explained that he changed his mind. Genuinely he had not thought it through.
And so when the moment came as it did, the family would have been left navigating impossible decisions under impossible pressure, without a clear framework to guide them.
No one needs sisters fighting like cat and dog over an impossible position at the bed of a loved one.
Things said in the heat of the moment that cannot be taken back.
Best avoided would be my opinion. And that is why a plan makes sense.
The Conversation Nobody Wants to Have
This is the heart of it. The reason so many people arrive at these moments unprepared is not that the information is unavailable. It is, but on many places.
The main thing is that it is a conversation that feels too difficult, too dark, too final to have while life is still comfortable.
We put it off. We tell ourselves there is time.
And then, suddenly, there is not.
What a Living Will and a DNR give you is control. They allow in individual to think clearly, while you still can, about what matters to you about what quality of life means to you, about what you would and would not want to endure, about what a good death looks like on your own terms.
They take the burden of those decisions off the shoulders of the people who love you, at the moment when they are least equipped to carry them.
There are also the practical realities. A DNR (or whatever it’s called today) to be effective it must be in the right place at the right time. It must be on file with your GP. It must be visible in your home if an ambulance is called. It must be flagged in any hospital admission.
A notice that cannot be found is a notice that cannot be honoured. Similarly, a Living Will that has not been shared with your medical team, your family, and ideally your solicitor, is one that may be overlooked entirely.
These are not comfortable things to arrange.
But they are deeply important ones.
What You Should Do
Write a Living Will that clearly states your wishes regarding specific treatments, under specific circumstances. Be precise. Vague language leaves room for interpretation at the worst possible time. Have it witnessed, dated, and stored somewhere accessible.
Discuss a DNR with your GP. This is a conversation between you and your medical team, informed by your health history and your personal values.
Tell the people closest to you what you have decided and why. This conversation, however difficult, is an act of love.
Review documents periodically. Your wishes may change as your health changes, and any updates must be properly recorded and re-signed to remain valid.
Social Care & State Support
The System Nobody Explains to You
One of the most disorienting things about watching a parent or loved one decline is discovering, often mid-crisis, that there is an entire system of social care and state support that you were never told about. Nobody hands you a guide. Nobody sits you down and explains what is available, who pays for it, how to access it, or what your rights are. You find out by asking, by searching, by making mistakes, and by occasionally being lucky enough to encounter a professional who takes the time to explain things clearly.
The Dying to Know programme exists, in part, to give you that explanation before you need it.
What Social Care Actually Is
Social care covers the practical, day-to-day support that people need when they can no longer fully manage their own lives — help with washing, dressing, cooking, cleaning, shopping, medication management, and getting around. It is distinct from healthcare, which is provided free by the NHS, in one very significant way: social care is means-tested, and in many cases, you or your family will be expected to contribute to the cost.
This surprises a great many people. There is a widespread assumption that the state will look after us when we can no longer look after ourselves.
The reality is more complicated, and considerably more expensive.
In England, anyone with assets above £23,250 including the value of their home in most circumstances is expected to fund their own care. Below that threshold, the local authority will contribute, on a sliding scale, until assets fall below £14,250, at which point the state covers the full cost of eligible care needs.
These thresholds have remained stubbornly low for years and do not reflect the true cost of modern residential care, which can run to £40,000–£70,000 per year or more, depending on location and level of need.
Importantly, the cost of this care is borne by local Council Taxpayers and not the rest of the state. The 2014 Care Act determines that.
How Social Care Is Assessed
When a person reaches the point where they need regular support, a formal needs assessment is carried out by the local authority. This assessment determines what level of care is required and what the local authority is obligated to provide or fund. A separate financial assessment a means test then determines how much the individual is expected to contribute.
You have the right to request a needs assessment at any time, and the local authority has a legal duty to carry one out. You also have the right to have a carer’s assessment carried out for yourself, if you are providing care for a loved one.
It is also worth knowing that NHS Continuing Healthcare a fully funded package of care provided by the NHS rather than the local authority may be available to those whose primary need is a health need rather than a social care need. This is not means-tested, and knowing it exists can make a very significant financial difference.
However, eligibility assessments are notoriously inconsistent, and families frequently have to advocate hard to secure it.
The Reality of Social Workers and the Social Care System
Social workers play a central role in the system, but it is important to go into any interaction with them clear-eyed about the pressures they are under.
Adult social care services across the UK are significantly under-resourced. Caseloads are heavy, timelines are stretched, and the people doing this work are often doing their best in a system that asks more of them than it provides in return.
In practical terms, this can mean that notes are not always fully recorded. Details discussed in a home visit or a hospital meeting do not always make it into the written record. Referrals between departments can lose important context.
Families who are not present, not persistent, and not asking the right questions can find that their loved one’s true situation is not being fully represented in the system.
This was my experience. Based on what I am told it is not unique. Most interactions with any of the State services are below par.
Keep your own records.
Take notes at every meeting.
Follow up verbal conversations in writing.
This is not being difficult it is being organised, and it can make a very real difference to the quality of care your loved one receives.
Practical Areas to Understand
Day-to-day care at home covers support services that allow someone to remain in their own home for as long as possible home care visits, meal delivery, telecare alarm systems, and adaptations to the home such as grab rails, stairlifts, and wet rooms.
Respite care provides temporary relief for family carer’s a short stay in a residential facility, or a period of increased home support. This is frequently underused because families do not know it exists or feel guilty asking for it.
Residential and nursing home care becomes relevant when a person can no longer safely remain at home. There is an important distinction between a residential care home, which provides personal care and accommodation, and a nursing home, which also provides qualified nursing care for those with more complex medical needs.
Hospital discharge planning is an area where families frequently feel caught off guard. Knowing your rights including the right to request a proper discharge assessment and to refuse a discharge you do not feel is safe is important.
Make sure you use all of your rights. You don’t have to feel bullied. Always ask for more time and a further explanation of the options - you should ask for help, that is what they are there for.
The Bottom Line
The social care system is navigable, but it rewards those who understand it in advance.
Knowing what assessments to request, what funding options exist, what your rights are, and how to keep effective records can meaningfully change the experience of supporting a loved one through later life.
None of this is easy knowledge to sit with. But it is far easier to learn it now, in your own time, than to discover it in the middle of a crisis.
Power of Attorney
What Is a Power of Attorney?
A Power of Attorney is a legal document that grants one or more people known as attorneys the authority to make decisions on your behalf. It is one of the most important legal instruments available to us as we plan for later life, and yet it remains one of the most commonly overlooked.
The reason it matters so much is simple. There may come a point in your life through illness, accident, or the gradual onset of cognitive decline when you are no longer able to make decisions for yourself.
In that moment, without a Power of Attorney in place, nobody has the automatic legal right to manage your affairs. Not your spouse. Not your children. Not your closest friend. Nobody.
The Two Types of Lasting Power of Attorney
In England and Wales, the relevant instrument is called a Lasting Power of Attorney, or LPA. I have no idea what it is in Scotland. I have little understanding of how it works ‘north o the border’. Let me know and I’ll add it to this essay.
There are two distinct types, and ideally both should be in place.
Property and Financial Affairs LPA gives your attorney the authority to manage your money and property — paying bills, managing bank accounts, collecting pension payments, buying or selling property, and handling investments. This type of LPA can, if you choose, be used while you still have mental capacity.
Health and Welfare LPA gives your attorney the authority to make decisions about your medical care, your daily routine, where you live, and — critically — decisions about life-sustaining treatment, if you have explicitly granted that authority. This type of LPA can only be used once you have lost mental capacity.
Both documents must be registered with the Office of the Public Guardian before they can be used. Registration currently takes several weeks to several months, which is another reason why putting these arrangements in place early is so important.
The lose documents, delay and take hours to answer the phone. Or is that just me.
What Happens Without One
When a person loses mental capacity without an LPA in place, anyone wishing to manage their affairs must apply to the Court of Protection to be appointed as a Deputy.
This process requires a formal application, medical evidence, legal fees, and an ongoing annual reporting obligation to the Court. It takes months. During that time, bank accounts may be frozen, bills may go unpaid, and decisions about care may be made without the family having any formal authority to influence them.
We encountered all of this. Neither of my in-laws had an LPA in place, and the absence of that document added an enormous layer of complexity to an already exhausting situation. Decisions that should have been straightforward required lengthy workarounds. Time that should have been spent caring was spent on administration.
It is a situation I would not wish on any family, and it is entirely avoidable.
Choosing Your Attorney
Selecting the right person or people to act as your attorney is a decision that deserves careful thought. Your attorney will have significant legal authority over your affairs, and you need to be confident that they will act in your best interests, in accordance with your wishes, and with the integrity that the role demands.
You can appoint more than one attorney, and you can specify whether they must act jointly meaning they must agree on every decision together or jointly and severally, meaning they can act independently of one another.
Joint and several authority is generally more practical, as it allows decisions to be made without requiring all attorneys to be present or in agreement on every matter.
It is worth having an honest conversation with anyone you are considering appointing before you formalise the arrangement.
Make sure they understand what the role involves, that they are willing to take it on, and that they are aware of your wishes in enough detail to be able to represent you accurately when the time comes.
When Should You Put This in Place?
The answer is straightforward: now. Or as close to now as possible.
An LPA can only be created while you have mental capacity. Once capacity is lost, that’s it - a mess is born.
There is no arrangement that can be put in place retrospectively. This is the single most important thing to understand about Power of Attorney, and it is the reason so many families find themselves in difficulty because the conversation was put off, the paperwork was delayed, and then something happened before either could be completed.
Hopefully by now you will start to understand how important this planning is.
What You Should Do
Put both types of Lasting Power of Attorney in place while you are well and clear-headed (not convinced both are needed, but my advice would be to have the pair).
Have a detailed conversation with your chosen attorneys about your wishes — not just in general terms, but specifically enough for them to represent you accurately.
Encourage the people you love to do the same.
Review your arrangements if your circumstances change significantly.
Financial Planning for Later Life
Why Financial Planning for Later Life Is Different
Most of us, at some point, have thought about financial planning in the conventional sense saving for a home, building a pension, putting something aside for a rainy day. These are the financial conversations we are familiar with.
Planning for later life is different. It is not about accumulating wealth. It is about understanding what you have, knowing what it may need to cover, and making deliberate decisions about how it is managed, protected, and eventually passed on. It is about ensuring that the financial dimension of your later years does not become a source of crisis for you or for the people who love you.
After more than twenty years as a financial adviser, the single most consistent observation I can make is this: most people arrive at later life financially underprepared not because they have not saved, but because they have not planned.
There is a difference.
Understanding What You Have
The starting point for any later life financial plan is a clear and honest picture of your current financial position. This means knowing what income you have or will have state pension, private or workplace pension, rental income, investment income and when it will arrive. It means knowing what assets you hold, including property, savings, investments, and any business interests. It means understanding what liabilities you carry and what your realistic monthly outgoings look like now, and how they are likely to change.
It also means understanding what your assets are worth in the context of care funding. Your home the asset most people consider separately from their financial planning is in most circumstances included in the care funding assessment if you move into residential care.
This catches families off guard with painful regularity.
Getting a clear picture of your financial position is not a one-time exercise. It is something that should be reviewed regularly, particularly as circumstances change.
The Cost of Care Planning for the Unplannable
One of the most difficult aspects of financial planning for later life is that the biggest potential cost care is also the most uncertain. We do not know whether we will need residential care, for how long, or what level of care we will require.
What we do know is that the costs are significant. Residential care in the UK currently averages between £35,000 and £45,000 per year (plus).
Nursing home care can run considerably higher. A stay of three to five years, which is not uncommon, represents a cost that can amount to the entirety of a modest estate.
To be fair, the average stay in a Care Home has been steady at two years for a quite a while and most people don’t end up on (Age UK stats) I have a separate document on that.
There are financial products designed to help manage this risk. Annuities, for example, which provide a guaranteed income to cover care costs in exchange for a lump sum, and can be structured so that payments are made directly to the care provider tax-free.
What is important is not that any one product is the right answer, but that question is considered before the need arises.
Pensions Making the Most of What You Have
For most people, their pension is their primary financial resource in later life, and yet it is also one of the most poorly understood. Many people reach retirement without a clear picture of what their pension will actually provide, how it is structured, or what options they have in drawing it down.
A defined benefit scheme sometimes called a final salary pension provides a guaranteed income for life. These schemes are increasingly rare in the private sector but remain common in public sector employment. They offer security and predictability, but limited flexibility.
A defined contribution scheme accumulates a pot of money over your working life, which you then draw on in retirement. Since the pension freedoms introduced in 2015, there is significant flexibility in how and when you access this. You can take a tax-free lump sum of up to 25% of the pot, draw a regular income, draw flexibly as needed, or purchase an annuity to provide a guaranteed income.
Each of these options has implications for tax, for care funding, for inheritance, and for your long-term financial security. The decisions you make about how to take your pension are, in many cases, irreversible.
Your Home Asset, Liability, or Both?
For most people in the UK, their home is their largest single asset and also one of the most complicated in the context of later life planning.
If you remain in your home, it is generally disregarded in the means test for care costs but only for as long as certain conditions apply, such as a spouse or dependent relative continuing to live there. If you move into residential care permanently, the value of your home is likely included in the financial assessment.
Some people choose to downsize in their pre-Zimmer years releasing equity and simplifying their living arrangements. Others look at equity release products, which have improved considerably in recent years but remain significant financial commitments that require independent advice.
In my opinion they do seem to be a one sided contract with the win for the provider. Having watched the interest rack up on the in-laws mortgage I assure you the numbers at year ten seem scary. However with the current Stamp Duty regime (in 2026) they make a bit more sense. Still, buyer beware and all that.
Seek advice and pay a fee for it.
What is worth avoiding though is making hasty or poorly informed decisions about property in response to a care crisis.
Decisions about transferring ownership to children to protect assets, for example, can have significant legal and financial consequences, including implications for care funding assessments and inheritance tax. In the main these options are scams and are to be avoided.
I am happy to defend that myself on that hill, so please get in touch if you want a fight over it. Do not put your house in trust in order to avoid anything. That’s it.
Wills and Estate Planning
A Will is a statement of what you want to happen to your assets when you die. Without one, the rules of intestacy apply a fixed legal framework that may or may not reflect your wishes.
Having a Will is essential. Keeping it up to date is equally important. Reviewing your Will every few years, or following any significant life event, is good practice.
Inheritance tax, currently charged at 40% on estates above the threshold, can represent a significant reduction in what you are able to pass on. There are legitimate and well-established strategies for managing inheritance tax liability through gifting, through the use of some trust planning, though pension planning looks to be an issue now. Charitable giving is another option. They all require planning and time to be effective.
Deathbed planning is rarely as effective as planning done years in advance.
Practical Steps to Take Now
Get a clear picture of your financial position income, assets, liabilities and review it regularly.
Understand your pension arrangements in detail and take qualified advice before making any irreversible choices about how you draw it.
Think seriously about care costs and understand how care is funded and what options are available to you.
Make or update your Will to reflect your current wishes, assets, and circumstances.
Consider estate planning if your estate is likely to be subject to inheritance tax.
Talk to a qualified financial adviser. The decisions you make in later life about your money have consequences that are often irreversible.
A Final Thought on Money and Later Life
Planning for later life is not just about money. It is about freedom, the freedom to make choices and to maintain dignity. To be a help rather than a burden to the people you love. It is about ensuring that when the pre-Zimmer years give way to whatever comes next, you and your family are not navigating that transition in a state of financial confusion or crisis.
The conversations are not always easy. But they are always worth having.
As always, please get in touch. If you want to know more about the Lunchtime Sessions there is more here. Dying to Know Lunchtime Sessions.
© Richard Smith — Dying to Know