Mrs Cook Goes Home- Person-Centred End of Life Care

Background

Mrs Cook aged 93 was living life to the full. She enjoyed good health, lived independently and drove her car to various social activities, including circle dancing, short mat bowls and games of scrabble with her friends.

Then, a few months ago everything changed. She was admitted to hospital with severe abdominal pain and subsequently diagnosed as having a large tumor with an anabscess attached. She had an operation to remove the tumor and a drain was attached to the abscess. Mrs Cook’s condition was diagnosed as terminal and she was fast tracked for CHC funding for end of life care.

Mrs Cook refused chemotherapy and radiotherapy and was admitted to a nursing home. Her solicitor contacted Relative Matters and asked us to visit as she had expressed a wish to return home.

The Client’s Perspective

When I visited Mrs Cook I was expecting to find a very sick woman wanting to go home to die. How wrong I was. Despite her pallor, she was alert and very clear about what she did and didn’t want. She felt that at her age it was inevitable she was going to die some time, but in the meantime, she didn’t want to languish in a nursing home with very little stimulation while she was waiting.

Care Planning

Care planning thus began for her to return home. Working with the CHC team was not easy. At first, we were asked if we could persuade her to stay in the nursing home which we vehemently resisted, stating that Mrs Cook had a right to die in a place of her own choosing.

One of our OT consultants was deployed to undertake a home visit to identify equipment that Mrs Cook would need when she returned home and to liaise with the Community Equipment service, to source it. A physiotherapy assessment was also arranged to help with Mrs Cook’s mobility.

Obstacles

The CHC Team agreed to continue funding at home until her review, provided Mrs Cook’s GP declared her fit to return home. This did not happen, as her abscess was still leaking and another had appeared. After a course of antibiotics there was a little improvement but her GP still refused to declare her fit to return home. After discussing the matter fully with Relative Matters, Mrs Cook decided to continue with her plan to return home, without her GP’s sanction.

The next obstacle was that the Continuing Healthcare Team would only allow visits from one of their providers for personal care to get Mrs Cook up and dressed and help her retire to bed, at times that would fit in with their contract. However, Mrs Cook was able to get herself washed and dressed independently and didn’t want a visit before 10am. What she wanted was help with shopping, light housework as she already had a cleaner once a week, and to go out for lunch once or twice a week as she was used to doing before her illness. All of which CHC would not fund. Following a discussion about the pros and cons of discontinuing CHC funding and paying for a care provider of her own choosing, Mrs Cook chose the latter.

The care Plan

Relative Matters arranged for a district nurse to visit daily to change Mrs Cook’s dressing and drain for her abscess. Also, a flexible care package for 10 hours week with a local home care agency that could deliver the care plan made by Mrs Cook and Relative Matters, a weekly delivery of frozen meals and for a keysafe and call alarm to be installed, with a personal response service, as Mrs Cook did not have anyone to act as responders.

The care provider was advised about the need for flexibility and for Mrs Cook to make decisions about what she needed on a day to day basis. Also, that there would come a time when the package would need to be increased.

A volunteer from the local hospice had been arranged to visit Mrs Cook once a week and she was advised to remind Mrs Cook that she could attend the hospice day servicewhen she was ready.

Discharge Day

Mrs cook returned home on the day we planned and when visited a week later to see how she was and whether the care plan needed tweaking, she was brimming with happiness to be home. Instead of the anticipated increase in her care package she wanted us to remove lunchtime and weekend calls as she felt she no longer needed them.

Conclusion

Mrs Cook was able to pay for her own care which gave her more choice. However, without Relative Matters or a similar service with a multi-discilinary team, who would have supported Mrs Cook with the detailed work necessary to achieve her return home?CHC would not have supported her as most of the intervention she required was not to meet a health need and Social Services would not have got involved as Mrs Cook wasfunded by NHS CHC and in any event, would only offer limited support as shefunds her own care.

Time will tell how long Mrs Cook has left to live in her own home and it was a privilege and immensely satisfying to help her continue her end of life journey, on her own terms.

Relative Matters Ltd

Relative Matters is an independent consultancy for later life providing a comprehensive social work and occupational therapy service for families, solicitors, deputies and financial advisors supporting people who fund their own care. We provide professional information and advice on a range of issues, evidence based care and mental capacity assessments, arrange personalised care at home or in carefully selected care homes and design bespoke care solutions, drawing together a variety of options from our professional training and extensive experience of working with older people.

Person Centred Planning Unwrapped

Many professionals consider their practice is person centred but I often struggle to find evidence to support their claim. So what does being person centred mean and what does it look like?

What Being Person Centred Means

There is no universally accepted definition. The key principle for being person centred is to support and empower people to make choices and have control about how they want to live their life. Person centred planning encourages people to be more involved in decisions about their care so they get the support and services that are appropriate for their needs and preferences. It’s about seeing the person as an individual before their age and disabilities, focusing on their preferences, expectations, needs and circumstances and trying to see things from their perspective.

Being person-centred also means being aware of a person’s emotional and spiritual well-being. Spiritual care is not just about religious beliefs and practices: it also reflects the person’s values, relationships and need for self-expression.

Communication Challenges

We need to be aware that people are sometimes unable to tell us what they want. There are many reasons for this; they may be living with dementia, have a physical disability, severe hearing loss or a mental health condition, which makes communication difficult. We may therefore have to use appropriate communication aids to find out what they want and actively encourage them to participate in their care planning so they can be real partners in making decisions about their care choices.

Getting To Know The Person45281480

When planning in a person-centred way with someone, we need to think about the effect of what we’re doing on the person as a whole. We therefore need to know the person and find out as much information as possible. Before you begin care planning, ask the person (or the person/people who know them well) about themselves and the things that are important to them. Listen carefully to what they are saying (sometimes what they are not saying can be as important) and ask probing questions to check your understanding is accurate.

All too often I am asked to undertake an independent care review and find the Manager and carers know very little about the person, especially if they have dementia and don’t have a family. What did they do for a living? Where did they live when they were younger and what did they enjoy doing? What made them happy? What made them sad? What are their likes and dislikes? and one of the most important questions of all, what is important to them?

Don’t only focus on what keeps people healthy and safe. See the person as well and what matters to them- not just what the matter is with them.

A case study

Being person-centred sometimes requires me to think outside the box to achieve my client’s chosen outcome. The following is a good example.

Mrs M lived with her husband who was her primary carer. She had a number of coexisting mental and physical health conditions, including dementia and severe anxiety. She had a suprapubic catheter tube inserted into her bladder through a small hole in her stomach, which she used to empty her bladder. She was encouraged to empty the bag herself to maintain her independence and this required undoing the tap and bending over the toilet pan.

As she progressed along her dementia journey, Mrs M began forgetting to turn the tap off and her clothes became soaked in urine. She always wore tight trousers and would become hysterical when this happened thinking she had wet herself. Her husband’s health was deteriorating, he was losing his sight and found changing her clothes increasingly challenging.

Mrs M’s GP and District Nurse advised that the time had come for her to move into a care home.

I was asked look at care options with the couple.

When I asked Mrs M what was important to her she told me it was remaining in her own home with her husband. They had been happily married for 64 years and didn’t want to live apart.

The solution I recommended was a small gadget produced by the Bath Institute of Medical Engineering department called a Wander Reminder costing £50. I advised this needed to be fixed to the cloakroom wall at the height where she bent over the toilet pan to empty her catheter.

When Mrs M bent over to empty the bag, a motion sensor would trigger a recorded message to remind her to turn the tap off. I advised the message needed to be changed regularly so she didn’t get used to it and ignore it.

Person centred planning and this £50 gadget enabled Mrs M to remain at home with her husband for a further year.

In conclusion

  • Get to know the individual and recognise their individuality. Decisions should always be made from their perspective
  • People have a variety of different preferences, history, circumstances and lifestyles, so the planning process needs to adopt a personalised approach
  • Find out what is important TO the person as well as what is important FOR them
  • Think outside the box to find solutions for the person to consider
  • Person centred planning needs to focus on achieving meaningful improvements in the person’s life and make a difference to it
  • Look at how the person’s identity and independence can be strengthened
  • The person’s needs are likely to change over time so make sure you review the care plan regularly.

“We cannot care for people unless we care about them and we cannot care about them if we don’t know who they are”

Checklist of Benefits and Other Payments (2017/18)

For most people funding the cost of their care home fees represents the second largest purchase of their lifetime, second only to a mortgage. The benefits and other payments to which older people are entitled will help towards affording the fees of their chosen care home or home care package.

Attendance Allowance

2017/18 rates Means tested Taxable
Higher rate £83.10 No No
Lower rate £55.65 No No
State Pension
Single Person £119.30 No Yes
Spouse/partner insurance £71.50 No Yes
Married couple £231.90 No Yes
Carer’s Allowance
£62.70 No Yes

Personal Independence Payment – Daily Living Component

Enhanced rate £83.10 Standard rate £55.65

Personal Independence Payment – Mobility Component

Higher rate.                                              £58.00                No                       No

Lower rate                                                £22.00                No                        No

Pension Credit

Single person £159.35 Yes No
Married couple £243.25 Yes No
Severe Disability Premium £62.45 Yes No
Capital Allowances (disregarded for pension credit)
Living at home £10,000 Yes N/A
Living in a care home £10,000 Yes N/A
NHS Funded Nursing Care £155.05 No No

Local Authority Support Thresholds in England

Lower limit £14,250

Upper limit £23,250

Personal Allowance £24.90

These benefits and Funded Nursing Care rates are accurate between April 2017-March 2018 and will be updated annually.

Other information about benefits and grants can be found at Benefits and Grants Available for OAPs

For a further  information contact Relative Matters Ltd who are regulated to give care and benefits advice.

Won’t Listen Or Can’t Hear? How Relative Matters’ gave a Client back the Ability to Engage Again.

Relative Matters were recently requested to review the care of an elderly lady in a nursing home. A care review involves a complete review of every aspect of a person’s life to ensure both their financial, physical, psychological wellbeing and religious/spiritual needs are met safely.

Care Reviews

It is often a complex piece of work because it involves reading the care plan through thoroughly, talking to care staff and other involved people such as families or external health professionals, talking to the person whom the care review is about and observing the environment. This then enables Relative Matters to make appropriate recommendations which can include things such as the purchase of more clothing, education and advice to care home staff on how best to interact or engage with the person, particularly if they have a cognitive impairment or dementia or provision of aids such as ipads to facilitate supported communication with loved ones if they live far away or other aids to enhance their ability to engage.

In this particular instance, the lady in question was withdrawn, and in discussion with care staff, Relative Matters were advised that because of her poor hearing she was choosing to disengage. There was some concern about the decline in her mood as a result. Comments such as;

“We know she can hear things but she’s choosing not to be involved”.

“You can’t engage her if she doesn’t want to be engaged”.

“She’s choosing to give up”.

Whilst for some people this may be the case, in this specific case, things just did not add up – her friend who visited frequently kept reporting she can talk and be involved if given one to one time, and her Solicitor who commissioned Relative Matters was saying the same. The inference was that the home had given up on her and that she had been labelled as someone who had withdrawn.

Our intervention

Relative Matters made enquires with the service that completed the hearing test, and were advised that the lady had been issued with new hearing aids, but that she had severe to profound hearing loss and standard hearing aids (although they were high powered ones) would only minimally help due to the specific type of hearing loss that the lady was experiencing. So, it was clear she wasn’t choosing to disengage, she just couldn’t hear!!

Relative Matters never give up on a person; the first tack in addressing this issue for the lady was to rephrase what care staff was saying in an attempt to re-educate them that the person is still inside the lady. In many discussions with various care staff members, when Relative Matters were told “she chooses not to respond to you” this was rephrased as “she has severe to profound hearing loss so it is likely she is really struggling to hear what has been said. We will keep trying to give her every opportunity to engage with us”.

Breaking down pre-conceived labels or thought patterns about people is so important. If you can change an established thinking pattern, just by rephrasing a negative statement into a positive one, this can have astounding positive effects.

On further investigation, advice was sought from the local Action for Deafness service about whether there was any device that may assist so that all opportunities had been explored and exhausted. It was identified that a personal listener device may work for the lady. Relative Matters swiftly acted to escort the lady for assessment and amazingly, one of the personal listener devices worked first time.

Fitting a personal listening device

When asked by the assessor at normal speaking pitch if she could hear, the lady said; “No I can’t hear!” Which of course she could as she heard the question at normal speaking pitch, but that her wry humour which Relative Matters had been told she possessed was coming to light immediately! The magical part is that the lady smirked and even managed a chuckle! Sharing a joke was priceless after being unable to fully engage with her in ‘normal’ conversation up until this point.

Facilitating engagement

The device has transformed the lady’s ability to engage. To capitalise on this, Relative Matters provided some education with care staff to ensure they fully understood the importance of the lady having it with her and on at all times. Within 24 hours, Relative Matters received an email from the care home Manager stating she had come downstairs, engaged in a game of dominos, had been invited to a poetry session but was most insistent she had no interest in going!

This demonstrates how this lady was given a wonderful opportunity to re-engage, have choice in what she engages in, and be able to communicate again.

Our Occupational Therapy consultant and dementia specialist, Liz Tremlett, undertook this piece of work and wrote this blog post.

Relative Matters Ltd

Relative Matters is an independent consultancy for older adults made up of a small, dedicated team of health and social care professionals, all of whom are fully insured, registered with the Health Care Professions Council (HCPC), and public disclosure certified. Working together they offer an unprecedented knowledge-base of the local care market and ensure care is highly personalised.

Keeping the older population protected during the colder months

wintermittensmugWith autumn here and winter creeping ever so closer, there is certainly a nip in the air. With this weather comes certain obstacles, especially for elderly people. As a younger person, there are plenty of things you can do to make these chilly seasons a lot more enjoyable for them.

Avoiding Slips and Falls

The first thing you can do to help your elderly friend or relative is to find a good, sturdy walking stick or mobility aid. This will not only reduce the strain on the legs and the knees, but it will also provide that extra bit of stability for a whole host of outdoor activities.

Many people believe it is only the height of the user that determines the walking stick height. But in reality, people come in all sorts of shapes, sizes and proportions. The secret to measuring your walking stick is by following this method:

walkingstickmeasure

Walking Stick Measure

Once you have helped them choose the perfect walking stick, make sure you accompany them on a couple of walks as they get used to the conditions. If you notice they are struggling, perhaps invest in a sturdy ferrule to put at the bottom of the stick.

If they have a garden or driveway, make sure it is gritted each week, as the bags can be too heavy for an elderly person to lift. You could also buy them a handrail if they have slippy steps at the front door.

The Right Clothes

Having the correct indoor and outdoor clothing is essential. Make sure they are a wearing at least a couple of layers as this is more effective than just one thick layer. Thick shoes for outside and nice warm slippers for indoors will keep their toes from freezing. Thick socks, gloves, a hat, and a scarf will ensure their face avoids a chill, as well as protection from illnesses.

Indoors

Try and keep the temperature inside their home above 18 degrees, as being alone in a cold house can cause many problems, including hypothermia. Help out your elderly friend or relative by providing them with a talking thermometer. This will help them keep on top of the temperature in their home when you are not around.

Also, try and organise it so their heating is serviced each year by a professional. This will make sure everything is safe and cost effective to keep their home warm throughout the cold months.

Perhaps treat them to a lovely home cooked meal like a hot bowl of soup or some shepherd’s pie. This will give you peace of mind that you are doing all you can to ensure they are eating enough.

If you need more information on looking after elderly people in cold weather, check out the NHS guide on winter health.

This guest post was provided by Rachel Campbell, a Digital PR Executive for Ability Superstore (https://www.abilitysuperstore.com/)

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Incontinence affects some older people (although it is not an inevitable part of ageing) If someone you know is challenged by continence, try these tips from Harman Direct will be helpful.

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Planning End of Life Care

As its Dying Matters Awareness Week I would like to talk to you about the importance of getting your elderly loved ones to make plans for their end of life care. I have seen what happens when people don’t plan for having an accident, a stroke or an illness such as dementia, which leaves them unable to make decisions such as whether they want life prolonging treatment and how and where they would like to be treated.

This issue is very important to me and although I will be unable to control what happens to me if I find myself in this situation, I want to choose how I live the end of my life and how my funeral is conducted. I have therefore taken out a Lasting Power of Attorney for both my property and affairs and my health and well-being. I am also  one of the 3 in 10 people who have made a will. Why on earth would I want to leave my hard earned dosh to the Government?

Holy spirit dove flies in blue sky, bright light shines from heaven, christian symbol, holy bible story

I would much rather address these matters while I am relatively young and have no intention of dying, although  like everyone else I have no control over that whatsoever. If I leave it too late and am no longer able to make my own decisions, I will not be able to make these plans myself.  Now I can relax, forget about the Lasting Powers of Attorney which will only be able to be used if I am unfortunate enough to loose my marbles so there is no danger of my sons (who are my attorneys)  selling  my home and emigrating with my loot.

Although it is possible to download the LPA forms and will template  from the Internet  and do it yourself I chose not to do this as unintentional mistakes can be made by not considering all eventualities. If you have made your own will and LPAs this only comes to light when it is too late to do anything about it. So find yourself a good solicitor. You will be glad you did.

Here is an example of a situation  I remember from my days of working on night duty at the local hospital. that illustrates my point nicely. I have made up their names for anonymity. To be honest I can’t remember them anyway!

Example of  how failing to plan can cause conflict in a family

Steve lived near his father and they had an especially close relationship. When his father had a stroke Steve was asked whether or not he wanted his father to be resuscitated if his condition deteriorated. Steve told me that his father valued his quality of life and felt that if it was seriously compromised, he would not want his life to be prolonged. However, his brother disagreed and as you can imagine, the situation could have caused a serious conflict within the family. Luckily his father’s condition improved and a decision did not have to be made.

Another example is a personal one. When my father became terminally ill, I knew exactly what his wishes were and had power of attorney to back up decisions I made on his behalf. He died peacefully at home listening to his favourite music, being assured it was OK to let go and reassured that my brother, sister and I would look after our Mother. I cannot stress enough the comfort it gave me to know I was carrying out his wishes just as he would have wanted.

A letter of wishes

I have one last thing to do to ensure my choices are taken into account, I am writing a letter of wishes to be go with my papers, so that my sons know exactly what I want to happen if I have an accident become seriously ill or lose the ability to make decisions for any other reason. Also where and how I want to live if I am unable to make my own choices, how I would like my body disposed of at the end of my life and what I want to happen afterwards.

We are all going to die

As a society we tend to avoid talking about these matters. However, death is a part of life and if they are faced, discussed and planned for we can forget about them, know our wishes will be heeded and acted upon and that we have saved the person or people we have left behind the responsibility of guessing our choices. Don’t leave it too late

Millions leave it too late to discuss end of life wishes. Don’t let an older person you care about be one of them.! The following website offers lots of good information to help you. Dying Matters.Org

7 Important Things You Should Know About Care Needs Assessment

In my previous blog, How To Avoid Negligence Claims – Working With Elderly Clients I outlined ten important questions to ensure practice is sound and person-centred and said that I would explore each one separately. My first considers care needs assessment for older people.

Local authorities must undertake an assessment for any adult with an appearance of need for care and support, regardless of whether or not the local authority thinks they have eligible needs and regardless of their financial situation.

The duty is triggered under Section 9 of The Care Act 2014 for anyone who appears to be in need of support services.

The purpose of an assessment is to identify the person’s needs, how these impact on their well-being and the outcomes that the person wishes to achieve in their everyday life.

Even if the person doesn’t want the Council to support them it is helpful that they have a needs assessment to provide a foundation for care navigation and procurement.

There are two interdependent parts to the assessment and both must be met to qualify for social care funding. These are care and support and financial eligibility

Planning senior care on a whiteboard.

Using a Care Needs Assessment For Planning

  1. The criteria used to assess care and support needs

To be eligible for social care funding a person must be assessed to have a ‘substantial’ or ‘critical’ level of need. As a minimum, they are likely to need support with personal care and daily living on a daily basis.

  1. How financial eligibility is determined

The following rules apply to financial assessments for both residential care and care in the home:

  • People with over £23,250 pounds savings/capital will meet the full cost of their care.
  • People with between £14,250 and £23,250 will make a contribution from their savings/capital as a tariff income of £1 for every £250. A contribution from income will also be assessed.
  • People with savings and capital below £14,250 will not make a contribution from capital but contribution from income will be assessed.

The difference between the assessments is that for residential care, a person’s property is taken into account.

  1. The care assessment

A Care assessment is not always undertaken face-to-face. It is not unusual for an unplanned screening assessment to be carried out directly with an older person over the phone. This can come out of the blue to the older person, especially if they live alone. Older people are proud and often eager to minimise the help they need. Many are hard of hearing. Make sure you ask to be advised if and when a phone assessment will be taking place when making the referral, so you can prepare and support the person.

During the assessment the person should be advised to answer all questions as if it was their ‘worst day’ without any support.

  1. The person must have capacity to make decisions during the assessment

If an individual requiring assessment lacks capacity and there is no registered LPA in place, the Care Act imposes a responsibility to refer the matter to the Court of Protection who can appoint a professional Deputy.

  1. The person has to be offered support to participate if necessary

New rules under the Care Act 2014 allow the person to take the lead in explaining what support they need to make life easier for them.

There is also a duty to provide independent advocacy to represent and support the person, if needed, to facilitate their involvement in assessments.

  1. Unpaid carer’s needs and their need for support are entitled to be assessed

There is a duty for carers to receive an assessment regardless of their needs for support or their financial resources. Also to provide independent advocacy to represent and support them if necessary.

  1. Obtain a written copy of the assessment

The assessment and any other relevant information will be recorded and authorised. Make sure the person obtains a copy as they or their representative have the right to challenge or dispute anything they don’t agree with.

Here are some helpful links

The Care Act 2014 – Assessment and Eligibility

How to get help with social care for adults in West Sussex

Apply for adult care assessment in East Sussex

Apply for adult care assessment in Surrey

My next post will consider Health Assessments

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