7437 h21 end of life resource pack - housing lin

End of Life Care Learning Resource PackInformation and Resources for housing, care and support staff in extra care housing.

ContentsAcknowledgements 3

1 Introduction and overview 4

2 Directory of key contacts in your local area 6

3 People and services who can help in the delivery of end of life care 8

4 Medication issues 15

5 Information about common symptoms which may occur at end of life 17

6 Mobility issues 24

7 Religion, culture and spiritual needs 26

8 Last days and hours 28

9 Care after death 30

10 Case studies and testimonies 32

11 Sources of education and training 35

12 Useful information 36

2 End of Life Care: Learning Resource Pack

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Acknowledgements

This resource pack was produced by theNational End of Life Care Programmeand Housing 21 with support from a grant from Skills for Care. The materials in the pack were compiled by Isabel Quinn, National

Programme Manager, National End of Life Care Programme with support

from Sarah Vallelly, Research Manager at Housing 21.

The pack has been piloted with Housing 21 extra care staff in Gateshead

and we would particularly like to thank Valerie Anderson, Care Services

Manager and Carole Bertram, Court Manager for their input.

Thanks are also due to Annette Villis, Head of Education, St Elizabeth

Hospice, Ipswich for her input and comments on drafts of this document

and to Dorothy Mathews and Lynn Gibson for source materials on

symptom management which are included in the resource pack.

The National End of Life Care Programme and Housing 21 are happy for

other organisations to tailor this resource pack to their specific needs

but please acknowledge the source material in any documents

produced which use this resource pack as a basis.

Version 1 : June 2009 (Review Date June 2010)


This resource pack is designed for anyonewho is caring for or giving support tosomeone with a life limiting condition in an extra care housing setting. This includespeople with any chronic condition such as heart failure or respiratory problemsas well as people with dementia. Manypeople develop general frailty and otherhealth problems as they get older.

The idea for the resource pack wasa recommendation from extra care housing staff who took part in a serviceimprovement project that Housing 21 andthe National End of Life Care Programmejointly undertook in 2008. The evaluationreport made it clear that there was a needto improve the knowledge and skills base of staff.

The pack is intended to be a practical toolwhich gives useful information andguidance. It offers advice on simple thingsthat staff can do, questions that should beaddressed and helps to identify how andwhen to access specialist help. The resourcepack will be updated annually. Much of theinformation contained is generic and will berelevant to extra care schemes in different

localities. However some information will inevitably be area specific, for examplelocal contact details for health andcommunity care teams. Where locallyspecific knowledge is needed, guidance in this pack will help you to find out therelevant information. Think of it as a kind of “sat nav” to help you and colleagues findyour way. The pack also contains details onimportant terminology concerned with endof life care and specialist health matters.

Q When should we think about‘end of life care’?

It is difficult to predict when people areconsidered to be approaching the last 6–12months of their life, but there are someways to work with colleagues in health toimprove recognition of people who areapproaching the end of life and considervery important issues that should beaddressed at this time.

Although all of us will at some point die, thetype of death will vary for each of us. Thereis a need to make sure those individualsand their carers are supported during thestages leading up to and during death.Death is not just a physical reality, but asocial event too and it is important toaddress the emotional, social and spiritualneeds of people and their families.

1 Introduction and Overview

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Providing effective, high-quality care forsomeone during the end of their life is ahighly skilled role and a challenging one.Without support and information, staff andcarers can find the experienceoverwhelming. This resource pack isintended to help you to deal with thechallenges of supporting someone who isdying and to identify how and when youneed to access specialist support fromhealth professionals and other

organisations. Managers in each extra carescheme are asked to keep local contactdetails up to date so staff can rapidlyaccess advice and support.

This resource pack has been piloted with arange of staff in different extra care settingsso that we can ensure that it is fit forpurpose. If you would like to offer anycomments or feedback which will improvefuture editions then please contactwww.endoflifecareforadults.nhs.uk.

Top tips Always remember...

It is very important to look after yourself as much as possible.It can become very difficult for a team to continue to function well when there areextra demands put upon it and this can happen if the person you are caring for isin the latter stages of their illness.

Some people within the team will have different strengths than others, use this todetermine who does what, sharing out the extra work accordingly.

If someone actively requests not to do or to do a specific task try to accommodatethis. However let the rest of the team know why, without breaking any confidences. Try not to let small concerns turn into larger issues.

The main thing is that professionals and carers can become emotionally involved,especially if they have been working with the person for a long time. This is humannature and must be acknowledged, understood and acted upon.

Communication is key: there should be clear and obvious routes where the carerscan go for support. This may be through supervision; it may be having a chat with a colleague over a cup of coffee or via a more formal session with a manager,Macmillan nurse, counsellor or member of the clergy.


Directory of key contactsin your locality

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Details of Professionals During Normal Working Evenings, Weekends or services Hours (Mon-Fri 9–5pm) and Bank Holidays

Advocacy Services

Benefits Advice

Bereavement SupportOrganisations

Carer Centres/Support

Community Matrons

District Nurses Please ring your local May be based at various locations surgery for detailse.g. clinics or health centres

Equipment Store

Homecare

This section will provide contact details about local services and professionals who canhelp in the delivery of End of Life Care. This should be completed by court/schememanagers or senior care or support staff.

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Details of Professionals During Normal Working Evenings, Weekends or services Hours (Mon-Fri 9–5pm) and Bank Holidays

Local Funeral Director(s)

Local GP surgeries

Local Hospice number(s)

Local Hospital number(s)

Marie Curie (Nurselink)

NHS Direct 0845 4647 0845 4647

Others

Pharmacy

Registrar

Specialist palliative care teamThis may include Macmillan Nurses,Palliative Care Consultants, Hospiceat Home, Palliative Social worker

Social Services

Urgent Care centres/practitioners


Working with professionals

• Remember that health professionalsdon’t always have all the answers.

• Try to find out as much as possible abouteveryone’s role so you can seek helpfrom the right person straight away whenyou have a question or problem. Keeptheir contact numbers on the list at thefront of this guide.

• It is also helpful to have realisticexpectations about what they can do forthe person you are caring for.

• If you can, give them as much up to dateinformation as you can about thesituation.

• If you are concerned about changes in aperson’s condition or a worsening of theirsymptoms seek help straight away; don’twait until the end of the week as mostdepartments close over the weekend.

Remember health professionals are humantoo and a smile or a thank you can alwayshelp in many situations.

Difficult decisions

When the person you are caring for is in thelatter stages of his/her illness you may beasked to help make important choices ordecisions about their future care.

• This discussion could be about whether acertain treatment is given in a particularcircumstance.

3 People and services who can help in the deliveryof End of Life Care

RelationshipsRelationships always play a very important part in our lives and when caring for someone at the end of life these can come under a lot of extra strain.

You are likely to come into contact with a number of health and social care professionalswhere relationships are built up as well as the relationships that you will develop with familymembers, your team members and of course the person you are caring for.

Sometimes it is helpful to develop these relationships as a partnership and working togetheras a team will help you and the person you are caring for get the best care at a difficult time.

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• This can be called an advance decisionand is often about the decision to refusetreatment if the person’s conditionworsens, the heart stops or breathingstops.

• It might be decided that the doctors and/or others should not try to resuscitate (“re start the heart”) of the person.

• The doctors can write in the person’snotes or records specific instructionsabout the advance decisions made soeveryone is aware and respects them.

It is very important to have all advanceddecisions to refuse treatment appropriatelydocumented in the person’s notes to letpeople know that this exists. Sometimesa specific form will be used, however thiswill be dependant on the decision. Suchdecisions should be communicated witheveryone who needs to know.

• It is essential to have honest and opendiscussions with all involved so thateveryone understands the reasoning that goes with every decision.

For further information downloadguidance ‘Advance Care Planning’ and‘Planning for your future care’ fromwww.endoflifecareforadults.nhs.uk.

TeamworkCaring can be physically and emotionallyhard work. If you have been looking after anindividual for some time you may begin tofeel drained. You may have a lot of intenseemotions and it may begin to “take overyour life.” It is important to recognise anysigns that this may be difficult for you. Youalso need to look out for your colleagues.

Many people are also dealing withsituations in their personal lives that mayimpact on their ability to cope with caringfor someone at the end of their lives. Ifyou are aware that this may be difficult foryourself or any colleagues speak to yourmanager who can arrange your workload.Never underestimate the support you canall provide for each other by having a cup of tea and a chat. This type of caring canalso be immensely rewarding and satisfyingwhen you see that someone has been well cared for until the end of their life.

AdvocatesMany people in society for one reason oranother can become disempowered to suchan extent that they are unlikely to be able tofulfil their basic human needs or demandtheir basic human rights. An advocate canhelp these people to become activemembers of society and ensure that theperson’s voice is heard.

The main themes of advocacy:

• Safeguarding people who are vulnerableand discriminated against or whomservices find difficult to serve.

• Empowering people who need a strongervoice by enabling them to express theirown needs and make their owndecisions.

• Enabling people to gain access toinformation, explore and understandtheir options and make their views andwishes known.

• Speaking on behalf of people who areunable to do so for themselves.


How they might help at the end of life:

• Help in difficult decision makingdiscussions.

• Help with legal issues. IndependentMental Capacity Advocate (IMCA).

How to find an advocate:

• Contact your local citizens advice.

• Speak to your social worker/care manager.

• Speak to your organisation.

The District NurseDistrict nurses play a crucial role in theprimary health care team. They visit peoplein their own homes providing care forpatients and support to family members.District nurses provide a 24hr servicedependant on the patient’s needs.

How can a district nurse help in End ofLife Care?

• Help to avoid admissions andreadmissions to hospital, working withhospital and community teams to ensurepatients can return home as soon as theyare well enough or when a decision hasbeen made that an individual is to die athome.

• Assessment of patients needs, then indiscussion with the patient/family/carestaff decide what support is required.

• Assess, plan, implement and evaluate an individuals care/treatment, enablingtreatment/support to be modified asnecessary.

• Supply medical equipment i.e. bed,mattresses etc for home care asrecommended in assessment.

• Recommend a Marie Curie registerednurse or Marie Curie Healthcare assistantdepending on the patient’s needs.

• Deliver palliative care interventions i.e.pain/symptom control monitoring andevaluation.

• Give psychological support to patient’sand their families and carers.

• Offer support in bereavement.

How can you find a district nurse?

Contact your local GP practice

District nurses are based within all GPpractices, your local practice will advise on district nurse referral/support forpeople in your care.

Referral to the district nurse is usuallyvia the GP or other healthcare teams.

Discharge Planning TeamsNormally based in hospitals and are oftenmade up of nurses and social workers. Theyusually become involved in planning safedischarges from hospital and ensuring thereis adequate care and support for individualswhen they leave hospital. They need toreceive a referral from ward staff to becomeinvolved when someone is due to go home.It is sometimes helpful for Court Managersto meet with Hospital discharge teams todiscuss any concerns they have abouttenants being sent home from hospital.

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The Macmillan NurseMacmillan nurses are people who haveadditional training which gives themexpertise in pain/symptom managementand in providing emotional support forpatients, their families and carers. Additionalspecialist services from Macmillan Nurseswill vary across the country. For example,within the Northumberland team there is anurse who is specifically trained to care forpeople with Learning Disabilities who havebeen diagnosed with a life threatening/lifelimiting disease.

How a Macmillan Nurse can help in End ofLife care:

• Macmillan Nurses work closely with GPs,district nurses and other health careprofessionals to help in providingpain/symptom control, guidance andsupport for patients, their families andcarers at any time in their illness, fromthe point of diagnosis to death.

Macmillan Nurses can help with:

• Providing assessment, monitoring andevaluation of pain/symptom control.

• Refer individuals to specialist palliativecare services if necessary i.e. hospiceservices, day hospice care.

• Co-ordinate an individual’s care throughworking closely with primary care teamsand others involved in the patient’s care.

• Offering active support to patients,families, carers, colleagues andprofessionals, including the provision of education and training.

• Offer support in bereavement.

• Any individual with a life limiting/lifethreatening disease can be referred tothe Macmillan nurse.

Who can refer?

• Anyone.

When/why you might refer:

• Support at diagnosis.

• Pain/symptom management.

• Help with investigations and treatments.

• As a resource for advice information.

• Psychological support.

Marie Curie Nursing ServiceMany people who have long termconditions and other serious conditionsmay wish to make plans for their futurecare. The Marie Curie Nursing Service canprovide high quality nursing care for peoplein their own homes – this includes extracare and sheltered housing – when theyare approaching end of life. Many peoplefeel it is important to be cared for in theirown homes at this time. If extra supportand care is needed to allow people to becared for at home, your District Nurse canarrange to have additional help and care.

DieticianA dietician is a health care professionalwho can provide practical informationabout food. They work with people topromote nutritional well being, preventfood related problems and treat diseaseand ill health. Dieticians work in a varietyof settings including hospitals, healthcentres, schools and GP practices and also can visit people in their own homes.


How they may help in end of life care:

• Advice about the quantity of food mostsuitable for the person.

• Advice about the most appropriate typeof food for the person.

• Advice regarding the best consistencyof food offered.

• Advice on the type and timing of mealsoffered e.g. “little and often”.

• Advice/suggestions about the food and drink people can take safely.

• Advice when people use non-oralmethods of eating and drinking.

• Liaise with other professionals.

How can you find a Dietician?

• Speak to your GP.

• Speak to your care manager/communitynurse/community team.

• Contact your local hospital.

Social workersSocial workers can provide emotional andpsychological support especially at difficulttimes in people’s lives. They aim to see theindividual as the “expert” and, using aperson centred approach, offer support withno judgement value. They can act in a caremanagement role as well.

How can they help?

• Assessments.


They can facilitate:

• Social inclusion.

• The person’s rights.

• The person’s choice.

• The individual’s views.

• All done with respect for the individual.

• Help the individual complete a personcentred plan.

• Support the individual and their familiesand/or carers.

PhysiotherapistA physiotherapist is a health careprofessional who is concerned with humanfunction, movement and helping peoplemaximise their abilities. Physiotherapists dofar more than fixing muscle and jointproblems and sports injuries although thatis most people’s perception of the role.They assess and treat people with physicalproblems caused by accident, ageing,disease or disability by using physicalapproaches.

Physiotherapists work in a variety of healthsettings including hospitals, health centres,GP practices, and also visiting people intheir own home.


• Assessment of physical abilities.

• Posture management.

• Mobility issues.

• Balance problems.

• Chest therapy.

• Assessment of position in specificsituations e.g. mealtimes.

• Assessment for specialist equipment e.g.wheelchair.

• Moving and handling advice.

• General advice.


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How can you find a physiotherapist?



• Contact your local physiotherapydepartment.

Occupational Therapist (OT)An occupational therapist is a health careprofessional who can help an individualwho has a physical, psychological or socialproblem that interferes with their ability tocarry out normal everyday activities. Theyassess, rehabilitate and treat people usingpurposeful activity and occupation topromote independent function. Their aim isto enable people to achieve as much asthey can for themselves.

Occupational therapists work in a variety ofsettings including hospitals, health centres,and GP practices and also visit people intheir own homes.


• Assessment of abilities.

• Give advice on how the homeenvironment can be changed.

• Helping people learn how to do things astheir abilities deteriorate.

• Adapting materials and/or equipmente.g. adapted cutlery.

• Reminiscence therapy.

• Life history work.

• Multi-Sensory work.

• Assist the individual with social/psychological issues such as low self-esteem, decreased confidence, coping skills.

• Reality orientation therapy.


How can you find an OccupationalTherapist?



• Contact your local Occupationaldepartment.

Community MatronsCommunity Matrons are highly skillednurses who coordinate care and servicesfor people with complex needs, which mayreduce admissions to hospital bysupporting them at home.

Community Matrons will visit adults whohave multiple long term conditions likediabetes, respiratory diseases and heartdisease. They aim to help people managetheir health condition at home rather thangoing to hospital. At times people may needto be admitted to hospital for extra supportand treatment. If people are admitted tohospital they can coordinate support forthem at home and allow people to leavehospital sooner.

Will all people with long term conditionshave a Community Matron?

No, only people who have been referred tothe Community Matron Service by the otherprofessionals who are looking after them.

What does the Community Matron do?

• Assess the needs of the person and their family.

• Coordinate the care they receive and helpidentify if extra services or support isneeded and make referrals to the otherservices.

• Educate patients, carers, and care staffabout managing long term conditions.

• Help develop plans about how tomanage acute situations.

• Develop a personalised care plan withindividuals, their relatives and carersand share this with health and socialprofessionals.

• During each visit they review medicinesand symptoms and arrange foralterations to be made if necessary.

• They can help people make an advancecare plan about their care preferences.

How would I get in touch with a CommunityMatron?

Your local Health Centre or GP surgery willhave the contact details. People arenormally referred to Community Matronsby the following:

• GP

• District Nurse

• Practice Nurse

• Accident & Emergency DepartmentConsultants

• Specialist Nursing Teams

• Social Services.


How can medicines be given?Medication can be administered via severalroutes and come in many different formssuch as:

• Tablets: Many people find it difficult toswallow tablets and if care staff noticethat someone is having difficulty ortablets are being chewed you shouldadvise the health care team looking afterthe person.

• Liquids: Sometimes easier to take butcan taste unpleasant. You can advisetenants to have a flavoured drink aftermedication.

• Patches applied to the skin: these canremain in place for several days and themedication is absorbed via the skin.

• Injections: usually given by nursing staff.

• Medicines for pain and other symptomscan also be given via a small portablepump (a syringe driver): a fine needlewith tubing attached is inserted justunder the skin of the abdomen or arm;

this is then attached to the pump. Thisis useful when someone is unable toswallow and also avoids the need forfrequent painful injections. It also allowscontinual management of symptomsover a 24 hour period.

Pain management at end of life When someone is dying any type of paincan be significant and overwhelming, itmay often be necessary to make a numberof medication changes towards the end of an individual’s life.

A person’s condition requires continualmonitoring in order to enable a good levelof pain/symptom control.

Evaluating the effectiveness of medicationsforms an important part of individualisedcare at the end of life.

Pain is thought to be one of the commonestsymptoms at the end of life but dyingpeople may suffer from many othersymptoms.

4 Medication Issues

Important

You should refer to your organisation’s specific medication policy. However, thissection contains some useful information about the types of medication that may beused to help relieve pain and other symptoms and the different ways that medicationcan be given.

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There is a very useful tool available todownload from the websitewww.endoflifecareforadults.nhs.uk.This is called the DISDAT Assessmenttool. A range of additional resourcesand reference materials are alsoavailable using this link.

MedicationDrugs used to treat pain:

• Drugs used to treat pain are known asanalgesics. Some analgesics work directlyon pain (such as paracetamol forheadache), while other medication isused for pain and has an indirect action(such as antidepressants).

• A group of drugs known as opioids arethe largest group of direct analgesicsused in palliative care e.g. weak opioidsare drugs such as codeine and strongopioids are drugs such as morphine.

Side effects of analgesics (Pain relieving drugs)Strong analgesics have three common side effects:

• Drowsiness – usually wears off a fewdays after commencing medication.

• Sickness – anti sickness medicines helpand this usually settles gradually over a few days.

• Constipation – is a common side effectand everyone taking a strong analgesicneeds to take regular laxative.

Doctors, nurses and pharmacists can adviseon treatments for side effects.

Concerns about MorphinePatients/families/carers often havequestions about morphine:• Is it addictive? – addiction is not seen

in patients taking morphine for pain.• Will it wear off? – pain relief due to

morphine does not usually wear off. • What about side effects? – many side

effects of morphine do wear off. Constipation is an exception and istreated with a regular laxative.

• Does morphine kill you (or do you die sooner)? – used correctly, morphine does not kill patients.

• Can you be allergic to morphine/can everyone tolerate morphine? – mostpeople can tolerate morphine, butalternatives to morphine are widelyavailable.

Communication problems in people with Dementia or Learning DisabilityRemember some people withcommunication difficulties may not be ableto tell us they have pain or distress, thismakes it important for us to observe anindividual’s behaviour, as changes in usualbehaviours may indicate distress which canbe physical, emotional or psychological.

We should consult with other people whoknow the person and may be able to tell usabout patterns of behaviour when theindividual is content and how they areaffected by symptoms.

Some examples of this are pushing foodaway if they feel sick, becoming withdrawn ifthey are in pain and becoming disruptive ifthey are distressed. Every person is different.

BreathlessnessAt the end of life some people may feelbreathless; this can be very frightening andunsettling not only for the personthemselves but also for the carers lookingafter them. These feelings of anxiety canactually then make the breathlessnessworse so people caring for the person needto be aware of this.

What can help?

• Some physical positions are better thanothers for people that are breathless. E.g. sitting forwards supported on a tablemay be better than lying back for somepeople.

• Helping the person to lower and relaxthe shoulders will increase the spaceavailable for the lungs to expand. Thisis best done by sitting to one side orbehind the person and gently massagingtheir shoulders down

• Loose fitting clothing is preferable.

The environment must be considered, it should be:

• calm

• cool – a fan is good

• have a good circulation of air – not stuffy

• consider things like smoke, noise, otherpeople who may “bother” the person,increasing his/her anxiety.

Drug therapy

RememberExtra care housing staff cannot advise on medication. The following section isincluded for information purposes andreference only.

There are medicines that can be very useful:

• Oxygen can be supplied into homes.

• Relaxation therapy can help ifbreathlessness is made worse by anxietyby helping to prevent hyperventilationand giving the person and the carerstrategies to use calming music,relaxation tapes or any other means thatthe person can understand/enjoy(slight change of emphasis).

5 Information about common symptoms which mayoccur at end of life

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Tiredness and lack of energyWhen people become more ill theygradually become less able to do the thingsthey previously did and have less energy.

There are 6 main principles in managing this:1 take frequent rests

2 prioritise activities

3 plan ahead

4 organises tools, materials and workareas – store things in easy reach

5 adopt a good posture

6 lead a healthy lifestyle.

These are all aspects that care and supportstaff can help with by prompting andoffering reminders, encouragement andsuggestions.

What you can do

When people say they are tired it isimportant to encourage them to:

• Pace themselves

• Carry out activities etc at times ofthe day when the person’s energylevels are at their best

• Save energy for the things thatmatter to them and that they enjoy

• Just do as much as they feel like – more harm can be caused by doing too much

• Rest and relax more – that can actually mean doing nothing

• Understand that they may have less concentration

• Understand that they may not be able to take part fully in what isgoing on

• Have their favourite things within reach to prevent wasting energy

• Rest on a chair or stool when doing things

• Avoid twisting, stooping or bending

• Carry out activities in a relaxed and efficient way to minimise stress on the body

• Avoid heavy meals as this affectspeople’s energy levels

• Remember that medical causes such as poor thyroid function, poor nutrition, depression, cancer and chronic infection can cause tirednessand lack of energy.

If you suspect a medical cause ask for a medical assessment.

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ConstipationPeople who do not move around as muchand are not eating and drinking as usualmay get constipated. Many medicines takenduring advanced illness also causeconstipation as a side effect; this appliesespecially to pain relieving drugs. Thissymptom can be a major problem forpeople at the end of life and is often notidentified until the person complains ofpain/discomfort; this can cause muchanguish and frustration for patients andtheir carers.

What can happen if someone is constipated?

• vomiting

• tummy discomfort, bloating and/or pain

• anxiety

• people “cannot be bothered,” becomelethargic

• colic – griping rhythmical pain in thetummy, that comes and goes every fewminutes

• exhaustion

• confusion – toxins escape into the bloodstream

• what looks like diarrhoea – this is fluidcontent from the bowel that “overflows”past the solid bulk of faeces and canproduce faecal incontinence.

What can be done?

• Laxatives act in different ways and theymay be prescribed or recommended bydoctors:

• they can stimulate the bowel to work such as senna or

• they can increase the bulk such as bran.

• they can soften the faeces such as docusate.

• Drinks such as prune juice can be usefulbut this may cause colic in somepatients.

• Occasionally, an individual may require asuppository or an enema, however theseare always given under professionalguidance and would not be administeredby care staff.

• Abdominal massage – specialist advicewould need to be sought from GP.

What you can do

• encourage people to drink more fluid

• suggest that high fibre foods are added to the diet, such as fruitand vegetables if they are able to eat them.

Urinary ProblemsMany people experience a range ofproblems with their bladder function.Immobility and lack of fluids can lead tovery concentrated urine, infection and insome cases kidney stones.

Delay in beginning to pass urine is knownas hesitancy, some people find it helpful tosee running water e.g. a tap turned on tohelp them.

Some people have difficulty in passingurine and this can be very painful anddistressing. This is often referred to asurinary retention.


Important

You need to seek medical advice if thishappens to someone you are caringfor. A doctor or nurse can assess thecause of the problem and in somecases will insert a tube (catheter) intothe bladder to let the urine out. Somepeople require to have a catheter inplace for a long period of time.

Catheter Care is required to preventinfection or trauma. The catheter bagshould be positioned below the level ofthe bladder. Care should be taken toprevent trauma or pulling of the cathetertube as it is held in place by a balloon.

You should notify the healthcare team ifyou note any cloudiness, bleeding or strongodour or if there is no urine being passed or the urine is bypassing the catheter andleaking out of the bladder.

Urine Infection: Many people developrecurring infections. Good toilet hygiene e.g. wiping front to back can help this. Urine infections can cause confusion, pain,frequency, and in some cases incontinence,or other behaviour change.

Measures to help:Frequent drinks, Cranberry Juice, hygiene.

Loss of appetiteAs illness progresses some people may losetheir appetite and lose weight. This may bebecause of the disease or the psychologicalstate of the person, such as fear ofvomiting, depression, anxiety or an aversionto the quantity of food given to them.

As people become more ill theirmetabolism slows down. The bodycannot digest food as well therefore it is very important not to insist thatpeople eat.

It is important for carers to understand thatat the end of life people do not have thesame nutritional needs, food cannot “buildup their strength” and in fact this may beone of the few aspects of life that theperson can retain some control over.

What you can do to boost appetite

Below is a list of some ideas that mayhelp and techniques to try:

• offer little and often

• offer “tasty tit bits”

• have snacks available to “nibble on”

• have enriched food

• have drinks that are food supplements(these have to be prescribed by a doctor or dietician)

• encourage people to eat slowly – they are more in control

• some people enjoy a small glassof alcohol before a meal as this can increase appetite

• encourage eating for pleasure rather than for survival.

And what you shouldn’t do

• don’t “nag” about mealtimes and eating

• don’t insist people should eat in the restaurant even if they have done so previously – they may prefer not to eat in company.

• don’t make people “finish” their meal.

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Remember that there are many physicalcauses of loss of appetite such as nausea,cancer, pain, anxiety, depression, infection,peptic ulcers and oral problems. Theseneed to be treated and managed.

Feeling sick and vomitingThis can be due to the illness itself or themedication that someone is taking. Peoplewho are ill often say that this symptom offeeling sick is more distressing than actuallyvomiting, or than some types of pain,therefore it is very important that the peoplecaring for these individuals know this.

What can cause nausea and vomiting?

• many medications can cause nausea and/or vomiting such as anti-inflamatorydrugs, e.g. ibuprofen, aspirin anddiclofenac, antibiotics and a group of drugs known as strong opioids, e.g. morphine

• some medical problems can also causevomiting e.g:

• bowel obstruction, this could be constipation

• inflammation of ulcers

• high levels of calcium

• problems with the inner ear.

What can be done by health professionals?

• The doctor will find out the cause of thesickness, this may need further tests orbe obvious by looking at side effects ofmedication.

• The doctor can prescribe anti-sicknessmedicines. These can be taken as tabletsgiven as suppositories or given in a

special pump. They should be takenregularly to prevent the sicknessreturning.

Things you can do to help

There are some useful tips worth tryingsuch as encouraging the person to:

• eat dry foods such as crackers

• have ginger (can be drunk as tea or ginger beer)

• have warm or cold food which doesnot smell as strongly as hot

• don’t prepare or cook food within eyesight or “smell distance”

• avoid strong smells in the environment including perfumes etc

• sip fizzy drinks

• eat little and often.

Mouth problemsPeople can sometimes develop very soremouths at the end of life; this can be a verydistressing symptom and can be a sideeffect of some medicines.

Palliative treatments such as chemotherapyand radiotherapy can also cause sore mouths.

What else can cause a sore mouth?

• poor oral hygiene – by carers

• no longer able to clean teeth

• reduced food and drink intake

• dehydration

• oral thrush and other mouth infections

• poor fitting dentures


• mouth breathing

• oxygen therapy.

What can be done?

Doctors/health professionals to:

• review all medicines

• treat any infection such as thrush.

What you can do

• Give regular mouth care especiallyafter meals.

• Use pineapple juice or soda water to clean the mouth (crushed pineapple if the person can chew/swallow). Pineapple juice is less harsh andabrasive than other citrus fruitjuices and stimulates saliva production. This can be mixed with a thickening agent if a person cannot swallow effectively.

• Use gauze or sponge swabs (caution is necessary as some people maybite at the swab).

• Vaseline or similar for lips (caution is necessary if a person is receiving oxygen, as Vaseline is flammable).

• Consider use of anti fungal/anti bacterial mouthwash.

• Check the fit of dentures (at the end of life gums can shrink) and clean well and regularly.

Encourage the person:

• to take frequent sips of water

• to use fruity or fizzy sweets

• to suck pineapple chunks or kiwi fruit.

Eating and drinkingAs people get older their eating anddrinking habits change and this is especiallythe case for people with life limiting, lifethreatening illnesses and those reachingthe later stages of their life.

Some things that you can ask yourself are:

Has the problem:

• Come on suddenly?

• Come on gradually?

Are there reasons why the person doesnot want to eat?

• Is there a problem with their mouth,gums or teeth?

• Are they in pain?

• Is the person constipated?

• Have they got an infection?

• Do they feel sick?

• Are the tablets they are taking affectingtheir appetite?

• Is the person breathless?

• Is the person depressed?

• Is the person frightened?

• Is the person easily tired or fatigued?

All of these signs are treatable to someextent and therefore further explorationmay be necessary.

23

What is the food like?

• Is the portion too large?

• Does the food look appetising?

• Does the food smell nice?

• Is the consistency right?

• A little thought can make a big differencewhen trying to tempt people to eat.

What is the environment like?

• Is it noisy?

• Is it crowded?

• Is the person in a comfortable sittingposition?

• Is the person being offered the rightamount of support?

• Would special/different plates, cups, orcutlery help?

The environment can have a big effect onhow we eat and drink and problems, whendiscovered, are usually easily overcome. You may find that people who have enjoyedeating in the restaurant prefer to take mealsin their own apartment.

Does eating and drinking appear difficult forthe person?

• Do they take a long time to finish a meal?

• Do they cough or splutter throughoutor just after having a meal or drink?

• Does food or drinks dribble out of theirmouth?

• Do they store foodstuff in their mouth for a long time?

• What if there are communicationdifficulties? (Important).

Things that can help

• eliminate and treat causes ofreduced appetite

• keep portions small, and try snacksrather than large meals

• try varying taste, consistency and temperature of food

• be creative with food to ensure maximum benefit from minimal input

• food supplements can be helpful iffood intake is reduced

• keep the person’s mouth clean, and moist

• avoid unpleasant smells, cooking odours and avoid strong perfumes

• give the person privacy ifembarrassed about eating/drinking

• give the person the correct amountof support at mealtimes

• change the equipment/utensils/ seating used

• if in doubt ask for a swallowing assessment.


Some things that you can askyourself are Has the problem:

• Come on suddenly?

• Come on gradually?

Are there reasons why the persondoes not want to move about?• Has the person suffered any recent

trauma?

• Has the person got any sensoryproblems, e.g. visual problems?

• Could the person have arthritis or anyother physical condition?

• Is there a problem with their joints ormuscles?

• Are they in pain?

• Is the person constipated?

• Have they got an infection?

• Are the tablets they are taking affectingtheir balance or movement?

• Is the person breathless when moving?

• Is the person depressed?

• Is the person frightened?

• Is the person confused?

• Is the person easily tired or fatigued?

All of these signs are treatable to someextent and therefore further assessmentand/or investigation may be necessary.

What is the environment like?• Is it noisy?

• Is it crowded?

• Is the person in suitable footwear?

• Is the chair at the best height for theperson to get out of?

• Is the person being offered the rightamount of support?

• would a walking aid help?

6 Mobility IssuesAs people get older their ability to move around can change, they can get slower, be notso flexible and can fall over more often with no apparent cause. This is especially the casefor people with life limiting, life threatening illnesses and those reaching the later stagesof their life.

25

• Is the flooring appropriate?

• Are the problems present in a specificactivity, e.g. bathing, stairs etc?

Does moving around appeardifficult for the person?• Do they take a long time to walk a short

distance?

• Do they have an obvious limp or othermannerisms when walking? Do theystagger or lose their balance often?

• Do they appear to have problemswhen starting or stopping walking when asked to?

• Do they step over or walk around unseenobjects on the floor?

• Is there a lot of hesitation at changesin floor surface or stairs?

• Do they bump into doors walls etc?

• Do they seem unable to sit straight?

These signs could all indicate problems thatwould need further assessment from otherprofessionals.

Important

At the end of life there are no right andwrong decisions about moving about,sitting up in a chair or being in bed allday. At this stage what is best is whatprovides the person concerned with most comfort and pleasure. What theperson and people close to them feelis best for them is everyone’s mostuseful guide.

Things you can do to help

• eliminate and treat reversible causesof mobility problems

• use good signposts to aid moving from one place to another

• look out for and remove trip hazards

• offer the correct level of support

• encourage activity little and often

• use aids to ease daily living skillse.g. getting in and out the bath

• have good footwear

• consider specialist equipment

• adaptation of the environment

• consider massage and other comfort measures.

And rememberPhysical contact can be a powerful wayof communicating to someone how muchyou care and how you will support themespecially when they are faced withuncertainty, fear, or distress whetherphysical, psychological or emotional.


7 Religion, culture and spiritual needs

The United Kingdom is a richly diverse multicultural society and due to that we willcome across people who have beenbrought up with different religious/culturalbackgrounds. As carers and housing staffwe must acknowledge this, especially at theend of life, as at this time there can bemany rituals connected with it.

All people’s lived experiences are differentand it is important to acknowledge this inhow we offer support to them. This isparticularly important when working withpeople with dementia and communicationdifficulties. We need to ensure our approachis truly person-centred. Refer to informationcollected on file such as an Advance CarePlan. Also the information given whenpeople first move in. It can also be useful totalk to family members to build up a pictureof who people are and what they value.

Spirituality is very difficult to define as itcan mean different things to differentpeople. However it has been said thatspirituality is that aspect or essence of aperson’s soul that gives him/her power andenergy. In other words “it’s what makes us

tick”. Spirituality is to do with relationshipswith something or someone and it isimportant to support people with a learningdisability to make connections with what orwhom gives them greatest hope, purposeand comfort.

Religion can be described as any specificsystem of belief, worship or conduct ofteninvolving set rituals and a philosophy and a way of perceiving the world. For somepeople praying and a belief in a good lifeafter death can be a source of reassuranceand comfort and if the person you supporthas been brought up with this belief it isimportant to help them achieve it.

Culture is not so much as where we camefrom geographically, but more about ourlived experience; the way we were broughtup, the practices and traditions that havebeen passed on from generation togeneration. This can be customs and rituals,religious or otherwise. We must try andsupport the person to maintain these.

Important

In reality spirituality and religion can get all mixed up. However the main thing is to respond to people asindividuals. We must also remember that just because people may not followany particular religion it does notnecessarily mean that spirituality is notimportant to them.

Things to consider:

• Diet – cultural and/or religiouslimitations of diet and food preferencesmust be considered. e.g. vegetarian orkosher food.

• Names – differences in languages canhinder communication so we need to bemindful as to how people wish to beaddressed.

• Washing and toileting – there can bemany differences in practice dependenton cultural/ethnic background. It isimportant to check.

• Modesty – this is an area that needs tobe treated with the greatest respect at alltimes. For example, generally Muslimwomen prefer not to be examined orsurrounded by male members of staff.

• Attitudes towards medical staff andillness – generally people willingly acceptthe authority of the professional inmedicine. However, people from differentfaiths can have different attitudes.

• Death – there are many ritualsassociated with death in all cultures andreligions and these must be respected ifthe person you are caring for has knownreligious beliefs or are from a differentethnic background from yourself. Youmust seek advice from the appropriatepeople. Refer to your organisation’sdiversity policy or you may want to speakto your equality and diversity officer ifyou require further specific guidance.

What you can doIt is in the “being” not “doing” that oftencounts at this time of life. Just beingthere, sitting quiet with someone canoften give much comfort.

Don’t try and solve problems for people,we are naturally ‘fix it’ people but at theend of life it is often better to allow thingsto happen.

Be aware of the spiritual dimension, weall have 3 dimensions, body mind andspirit.

If the people you are caring for are havingdifficulties in expressing themselves tryusing practical methods such as music,photographs, drawing and painting oraromatherapy.

Find out if the person you are caring forhas expressed any previous wish ordesire for particular things to happen/take place.

Has the person a different ethnicbackground from you? If so has he/shegot any family members who can adviseyou or is there a local group nearby?

Don’t assume that if someone is recordedas belonging to a particular faith thatthey practice it! After all many of thegeneral population are recorded as“Church of England” but may not havebeen to church or practiced any of theassociated rituals for years.

It is important not to impose your ownbelief system onto the person you arecaring for or to allow the family to do so ifthe person does not want to participate.

Remember, if in any doubt seekadvice.

27


What might happen?As the end of life approaches the person,family and carers all have to makeadjustments. Some small adjustments mayhave already been made over weeks ormonths, but as death approaches the realityof the situation makes things more difficultfor some people.

It is normal for carers and professionals tobe affected by the death of the people thatthey are caring for. It can be a frighteningtime if a carer has not experienced it before,they can be unsure what to do, how to actor will they “get things right”. Most deathsin these circumstances are expected andtherefore can be planned to some extent,which can help to alleviate some, if notmost of these fears.

However, in some instances, although theperson has a disease which is life limiting/life threatening, they may die unexpectedlyand their death may not have beenanticipated i.e. deterioration may not havereached the day by day stage. When aperson dies in these circumstances it maycause more emotional upset to theirfamilies/carers than if their death had

been anticipated as imminent. This is oftendue to the suddenness of the death andmissed opportunities to say “goodbye” orhave people significant to the personpresent at the death.

Although dying in this way is unexpected itis not the same as a “sudden death” wherethe person has previously been fit and wellwith no advanced disease diagnosis,therefore it is very unlikely the responsibledoctor will ask for a post mortem or any ofthe other procedures associated with a“sudden death” if he/she has seen thepatient within the last fourteen days, (for adoctor to issue a death certificate this is arequirement of English law).

What happens to the person?

• For most people with advanced illnessthere is a gentle “winding down” of thebody’s systems, this can be described bythe general principle of deterioration inthe person’s condition happening:

• month by month

• day by day

• hour by hour.

• As they approach the end of life, theircirculation slows so that their fingers,nose and toes feel cool and are a littlebluish or mottled.

8 Last days and hours

29

• Their breathing pattern may change andbecome slower or irregular.

• At the end there is a gentle absence of liferather than a sudden presence of death.

• Peaceful silence.

What happens to others?

Everyone can respond differently

• some cry, others don’t

• some talk, others are quiet

• some feel helpless and useless

• some feel awkward or an urge to “do something”

• everything is normal.

Important – things that can help

• Don’t panic or feel that you can’tbe upset.

• Someone will need to check that the patient has died and then inform the GP or District Nurse to come and certify the death.

• After the death ask those present(if any) if they want to stay a while.

• Contact any significant people or family not already there and notifythem.

• Tell the other people who live with the person who has died, there is no right or wrong time for this.

• The doctor who saw the patient withinthe prior few days should write the deathcertificate.

• There is no requirement for nurses toclinically confirm that death has occurred,they only need to document the fact, thetime it occurred and who was present.

• The death will need to be registered atlocal registrar’s office in the sub districtwhere the death has occurred.

Things that may be helpful during the lasthours and days:

• Have a list of telephone numbers ofpeople you need to contact by the phone– this should include “out of hours”doctors.

• Have your usual GP write out anexplanatory letter for staff to show “outof hours”/locum doctors when they call.This takes the pressure off the staff/family.

• Ensure that you have enough of therequired medication at all times.

• Sit down and talk to others who arefriends or live with the dying person sothe end does not come as a shock.

What to do when someone diesMany people have had no experience ofbeing there when someone dies and/orhaving to deal with the practical aspectsthat follow death. They can becomeextremely worried that they do not followthe correct procedures and this can be ontop of having mixed emotions about thedeath of the individual. The death ofsomeone close to you is a profound andsignificant event and everyone reactsdifferently: people can feel shocked, numb, upset, angry or in fact relieved that the person is now at peace.

There are some things that need to bedone, however you do not have to do them immediately, don’t feel rushed.

Who to contact:

The relatives:

• If the person’s next of kin is not aware ofthe death you will have to notify them –some relatives will have expressed a wishwith regard to the time of informing themof the death e.g. some people may notwish to be informed during the night,other people may wish to be informed atany time of day or night.

• If there are no documented requestsfrom the relatives they will have to beinformed as soon after the death aspossible.

The GP:

• You will need to inform the GP or out ofhours doctor.

• They will come out and certify death. If this is outside normal working hourseither the out of hours doctor will comeor the GP will come at the earliestopportunity. In cases of expected deaths,if the district nurse has been involved inthe care they can attend and verify thedeath.

• The GP has a legal requirement to informthe coroner if a post mortem is needed,however with an expected death this isusually unnecessary.

9 Care after death


• The doctor will give you a certificate ofdeath with a form called ‘Notice toInformant’ which tells you how to registerthe death.

The Funeral Director:

• Once they have the death certificate thenext of kin should contact a funeraldirector (they provide 24 hour service).

• They can then take the body to theirFuneral Home (They can help you lookafter the body at home if you want that,this may apply more to some specificreligions/cultures than others).

• They will ask about funeral arrangements.

• It is helpful to know any expressed wishof the deceased person, e.g. did theywant to be buried or cremated? This issometimes on admission documentation.

• You need to be aware of any cultural orreligious beliefs so they can be actedupon.

Registering the death:

• This needs to be done within 5 days.

• If there are no known relatives check theinformation file in the office which detailstenant records.

• If there are relatives contact them.

• The registrar will issue a certificate ofburial or cremation (also know as a greenform).

• The family will give this to the funeraldirector.

• They will also give them a certificate ofregistration of death form (BD8). This isrequired for social security purposes.

Other pertinent people:

• You will have to inform your line manager/locality manager/point of contact.

• Friends of the person who has died. It isimportant to recognise that other tenantsmay be affected by the death of a tenant.It is really helpful to be honest with themand allow time to talk about the person.

• It can be useful to have an annualremembrance service or otherappropriate event to remember tenantswho have died.

• You could also speak to healthprofessionals if you are concerned thatsome tenants are particularly affected bythe death of a fellow tenant. Bereavementis difficult for everyone and affects peoplein different ways, but some people areparticularly at risk of being adverselyaffected.

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All of the examples in this section aredrawn from actual situations in extracare housing and are written from theperspective of staff and relatives.However, names and specific detailshave been changed to protect theidentity of individuals involved. Researchevidence has shown that healthprofessionals, hospital staff, relativesand residents often like to see practicalexamples or case studies about howpeople can be supported in extra carehousing. It is also useful to highlightchallenges and obstacles to deliveringchoice and supportive care.

These examples can also be used astraining aids to stimulate discussion andthink about practical solutions to issuesarising. They are intended as a startingpoint. It may be useful to develop yourown case studies arising from your ownexperience. When writing up anyexamples try to identify what workedwell for people, what were the mostdifficult things, how did you feel andhow did you respond.

Mary

Mary was a ninety six year old lady who haslived at Court A since it opened a couple ofyears ago. She began to become graduallymore frail and she needed more help fromthe care staff for personal care. Sheeventually became bed bound and wecould see she was dying. The GP asked herfamily if they felt she could go into hospital.Her daughter was adamant that she shouldremain in the court in her own flat, with carestaff who she knew and had a goodrelationship with. This was Mary’spreference. The GP reluctantly agreed andarranged for the District Nurse to Call.

The Court Manager contacted the socialworker and arranged for authorisation forthe Care Package to be increased. Thenurses arranged a special mattress torelieve pressure and some moving andhandling equipment. They advised the staffabout positioning and pressure area careand arranged to come in twice daily. Theyleft contact numbers to get in touch over 24 hours for advice or to visit. They also left mouth care packs and swabs to cleanher mouth.

The family were sitting with Mary butCourt A staff delivered all her care and every time they passed the flat they wouldcall in to check her comfort, position andpressure areas.

10 Case Studies and Testimonies

33

She was very settled and the staff even putsome of her favourite perfume on a tissueunder her pillow. The staff continued to talkreassuringly to Mary during all of their caretasks even though she was semi conscious.Mary died comfortably 3 days later with herdaughter and the court manager at herbedside. The care staff at the court expressedhow they felt privileged to provide her careright to the end of her life and it feltappropriate that she died in her own flat.

Macmillan Nurses working with extra care housing

We have looked after many people in thecourt who have died from cancer. The localMacmillan Nurse arranges regular visitsfrom district nurses to sort out medicationand arrange equipment. We always feel thatwhen the Macmillan nurse is involved, thishelps people to remain in the court evenwhen they reach the dying phase. She has conversations about what to do insituations and makes sure we understandhow to get advice at night or over theweekend. She also lets the doctor knowthat the person wants to stay in the court.

In recent times she now completes anadvance care plan and lets the staff knowwhere this is kept. The court staff find this isreally helpful if a doctor is called. It is alsouseful if relatives say they think their familymember should go to a hospital or hospice.We think that everything falls into place whenthe Macmillan nurse is involved. We nowhave community Matrons who look aftersome of the tenants who have respiratoryproblems or cardiac conditions. They also doan advance care plan and leave advice withcourt staff how to help if a tenant getsanxious or breathless and who to contact.

Sarah

Sarah was a 78 year old woman withdementia and a history of COPD (Airwaysdisease). She was very breathless and usedto be a heavy smoker. The CommunityMatron had just started to be involved tohelp manage her symptoms. Sarah was verypopular with the other tenants and they alllooked out for her. One weekend she had a fall in her flat and the staff called thedoctor.

She was admitted to hospital where theyfound she had some sprains but nofracture. The hospital staff said she neededsome rehabilitation before going home toimprove her mobility. The court managerthen got a call from the hospital to say shehad developed a chest infection. After aweek she visited Sarah in hospital andSarah was asking when she could comeback home to the court. The manager toldher that everyone was looking forward toher coming back and Sarah was delighted.

Sarah’s niece called into the room just asthe court manager was leaving and said ‘My aunt would never manage at homenow, and we’ve got a meeting with thehospital social worker’. The court managerspoke to the ward staff and requested thatshe be contacted for their planning meetingfor Sarah’s discharge. She called the ward a week later and was told there would be no meeting as Sarah was going into a care home.

After two weeks Sarah’s niece came to thecourt to collect her belongings, saying shehad just moved into a care home, and wasreally confused just staying in her room allthe time. Sarah developed another chestinfection in the care home and was takenback to hospital where she died threeweeks later.

The court manager felt very frustrated thatSarah was not given the opportunity toreturn to her own home and be cared for bystaff who knew her well. After all, this waswhat Sarah wanted. The court managerarranged to visit the hospital social workteam to inform them what care can beprovided in extra care housing. She alsotried to set up some meetings with thedischarge planning teams at the hospitalto identify a range of issues around hospital discharges and to request thatcourt managers are informed about anyplans for discharge.

Care and support staff perspectives

“We try to support relatives as much aspossible. When one of the tenants is poorlywe offer family and friends the use of therelative’s room to get some rest. It can behard after a tenant has died.”

“Our community matrons have started todraw up a plan about care wishes andpreferences with all our tenants that theyare involved with. This is very useful for allthe staff to show to doctors if they arecalled out and want to take someone tohospital. It’s really helpful and the medicalstaff take notice of it. They now look at waysof giving medication at home instead ofsending people to hospital.”

Relative perspectives

“During my mum’s last few days we werenot only supported way beyond the court’sbrief but my mum was looked after withsuch sensitivity that it made her passingdignified and peaceful. My gratitude isobviously for my mum’s care, but also I feelquite privileged to have been part of such acaring community and would love to thinkthat standard of care could be available toall those who needed it.” (Excerpt from aletter received by Housing 21).


There are many different sources ofeducation and training opportunities thatmay help you to feel more confident incaring for people at end of life. There areregular courses provided by local palliativecare yeams and hospices in many areas.

Many district nurses and communitymatrons are available to discuss how tosupport specific residents they are caringfor. The community matrons will explain why it is appropriate to put plans in place to manage some situations which mayhappen. This can help avoid crisis situationsand help reduce panic for residents, carestaff and family members.

It is also useful to look at case studies ofpeople at end of life care to demonstratehow the care was managed. Some areincluded in the previous section of this

pack, all from Housing 21 courts, but youmay wish to write up your own fromprofessional experience. Think about thechallenges, how these were overcome andthe learning points, and include them asadditional resources in this pack.

There are a range of national workforceinitiatives to improve the skills of peopleworking in health and social care. Inconjunction with Skills for Health and Skillsfor Care there has been work undertaken toproduce principles and competencies forworkers who look after people at the end of their life. There are also communicationsskills training pilots and e-learningmaterials. For further information lookon the workforce page ofwww.endoflifecareforadults.nhs.uk.

11 Sources of Education and Training

For Housing 21 and other specialist housing providers – we would ask local areamanagers (care service managers, possibly court managers and/or the corporatelearning and development team) to research sources of training and support andinclude this information in the resource pack folder.

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12 Useful InformationSome useful additional resources are included here. Staff may wish to add to thisover time.

A quick overview of extra care and shelteredhousing

This factsheet is also available to downloadfrom the End of Life Care Programmewebsite. It may be useful to print out copiesand give them to health professionals likeGP surgeries, community matrons, districtnurses and other statutory and voluntarysector organisations you work with so thatthey have a clear understanding about whatis offered in extra care (and shelteredhousing).

Flow chart for supportive care

This was developed as part of Housing 21’sservice improvement work in one of thecase study sites and can be adapted forwider application.

The following websites are all sources ofuseful information and support materials:

www.endoflifecareforadults.nhs.uk

http://networks.csip.org.uk/independentLivingChoices/

www.housing21.co.uk

A quick overview of sheltered andextra care housing

This brief introduction outlines the keyfeatures of sheltered and extra carehousing and summarises how both types of retirement housing contribute to community care and health goals;specifically end of life care.

Background and policy context

Many people are familiar with shelteredhousing for older people which hasexisted in various forms for more thanforty years. Extra care is a more recentdevelopment and offers speciallydesigned housing with the addition of24 hour on-site care.

In July 2008 the Government published its national End of Life Care strategywhich provides a framework to promotehigh quality care for adults approachingthe end of their lives with a vision to“enable more people to die with dignityin a place of their choosing”. Thestrategy recognises the value of extracare and sheltered housing and drawsattention to the needs of extra careresidents at the end of their lives.

Sheltered and extra care housing areimportant community resources insupporting an ageing population.

37

The Community Care Act of 1990 laiddown the aims of providing care withinolder people’s homes rather thaninstitutional settings. In its nationalhousing strategy for an ageing society,Lifetime Homes, Lifetime Neighbourhoods(HMSO, 2008) the Government sets outa clear role and vision for the future forspecialist housing and emphasises theimportant links between housing, healthand social care.

Extra Care Housing

What is it?

• Schemes or “courts” typically contain 30 to60 self-contained apartments with fullkitchen and bathroom facilities designed tomobility and wheelchair access standards.

• Offers the full legal rights of occupationassociated with being a tenant or home-owner in combination with access to 24hour on-site care which is delivered flexiblyaccording to a person’s changing needs.

• Schemes offer a diverse range ofcommunity facilities; communal lounges,hairdressing salons, shops, laundryfacilities, consulting rooms and restaurants.These facilities are available to bothresidents and older people in the widercommunity.

• There are now over 1,000 extra carehousing schemes across England. Manymore are being built, mainly by housingassociations and private developers.

• Extra care can be for rent, outright sale orpart ownership. There are a range ofdifferent sizes of scheme and “retirementvillage” type developments containing over300 dwellings are becoming morecommon.

And what it isn’t!

• An ‘upmarket care home’. This is acommon misconception of and cancreate confusion about the way care isdelivered. In extra care housing, care isdelivered as part of a care plan at settimes agreed with the resident. Residentshave their own front door, so carers can’tjust pop in anytime unlike in a residentialcare home.

Who is extra care housing for?

• Designed for older people who havesome care and support needs. Peopleoften move in because of a healthproblem or following a personal crisis.

• Most (but not all) people living in extracare housing have a care package of atleast four hours of personal care perweek. Care is generally assessed andpaid for by local social services.

• Extra care housing can enable olderpeople to recover from a stay in hospitaland as a base for rehabilitative andintermediate care. This works well ifhospital staff actively involve extra caremanagers in discharge planning.

• Some schemes include clusters of flatsspecifically for people with dementia.

• A diverse range of activities are providedby scheme staff, local statutory andvoluntary organisations. These areavailable to residents and older people in the local community.


Care and support

• Care teams are based on-site as are staffresponsible for building managementand co-ordination of support services(“Court Managers” or “Estate Managers”).

• Community health resources: Many extracare housing schemes have on-site fallsrehabilitation clinics, GP surgeries,visiting chiropodists, district nurses,opticians and Community Mental HealthTeams (CMHT).

Sheltered Housing

What is it?

• Schemes or “courts” comprise 30 to 40flats and/or bungalows with anemergency alarm call service and somecommunal facilities such as a residentlounge and laundry.

• Individual flats or bungalows aredesigned to be easy to manage.

• On-site support is often provided by ascheme manager (“warden”).

• Offers older people privacy,independence and peace of mind withthe added benefit of a social community.It can prevent dependency and reducesocial isolation and depression.

• Provided in a range of tenures; rental,part ownership or outright sale. Mostrented sheltered housing has beendeveloped by local authorities or housingassociations.

Who is it for?

• Originally intended for active people over55, but over time more older or frailerpeople are living in sheltered housing.

• The likelihood of living in shelteredhousing increases with age. 4% of peopleaged 65–69 increasing to 19% of thoseaged 85 or over.

• Increasing numbers of older people livingin sheltered housing have sensoryimpairments, mobility problems ormental health issues.

• It is a community resource and often thefacilities and activities provided are usedby older people in the wider locality.Schemes usually have established linksto other statutory and voluntary serviceproviders for older people.

Care and support

• Care is not usually provided but residentsare entitled to be assessed for care andsupport by their local authority. If eligiblethey can obtain home-care services fromsocial services.

For more information on sheltered and extra care housing – seehttp://www.dhcarenetworks.org.uk/IndependentLivingChoices/Housingor www.housing21.co.uk

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Extra Care HousingFlow Chart for Supportive Care

Resident has changing condition

––––––Assess Needs

––––––General no urgency

• regular assessmentreview 3 monthly

• discuss with multi-disciplinary team

• order equipment viaSocial Care.

• discuss with multi-disciplinary team. Placetenant on SupportiveCare register

• regular assessmentand review (at leastmonthly)

• review care provision

• apply for ContinuingCare Funding if criteriais met

• order equipment aspriority/palliative care

• request DistrictNurse to complete and send SpecialPatient form to Outof Hours services

• doctors.

• discuss with GP &District Nurse, sendnotification to Out ofHours doctors andnursing services

• regular assessment -review daily

• request any equipmentas urgent/end of Life

• consider request toMarie Curie NursingService

• supplement carepackage usingcontinuing care funding

• commence LiverpoolCare Pathway.

Resident has changingcondition and requires

medical review––––––

Assess Needs––––––

Not End of Life butgreater need (months)

Resident has deteriorating condition

––––––Assess Needs

––––––End of Life very urgent

(Weeks/Days)

If you would like to find out moreabout any aspect of what we do,please contact us:

Housing 21The Triangle, Baring RoadBeaconsfield, Bucks HP9 2NA

Tel: 0370 192 4000Fax: 0370 192 4001Email: [email protected]

For further information contact:

End of Life Care Programme3rd Floor, St John’s HouseEast Street, Leicester LE1 6NB

Tel: 0116 222 5103Fax: 0116 222 5101Email: [email protected]

If you need this information in a different format such aslarge print, braille or another language, please contact us. Housing 21 is a charitable industrial and provident society.RS2/pma/2009/07

Partly funded by

7437 h21 end of life resource pack - housing lin

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