Microsoft word - palliative care in dementia leaflet-vsept 2013

Hydration and nutrition
The BCUHB website has links to the documents and policies described in this leaflet. The effects of dementia on food and fluid intake and hence nutritional status can be considerable. Ongoing nutritional screening and regular monitoring are important. Refer to the Guidance on the use of the Do Not Attempt
BCUHB Adult Nutritional Support Policy for guidance on nutritional Resuscitation policy
screening and management. Consider dysphagia screening. Cardiac and respiratory failure is an inevitable part of dying and it Identify and address dental and oral care issues. Palliative Care in Advanced Dementia
is necessary to identify on a case by case basis, those for whom Cardiopulmonary Resuscitation (CPR) is likely to be unsuccessful. Decision making surrounding nutrition and hydration management Leaflet for Professionals
is complex and for individual patients a multidisciplinary approach There comes a time for every person when death is inevitable. It is is best practice (Royal College of Physicians Report. Oral feeding therefore essential that patients are identified for whom cardiac difficulties and dilemmas. A guide to practical care, particularly arrest represents this natural event and for whom CPR is inappropriate. It is also essential to identify those patients who do Dying well with dementia includes:
not want CPR to be attempted and those who completely refuse it. In the dying phase, a person's desire for food and drink lessens. Continue to offer diet and fluids unless it causes distress or The recognition that many people with dementia will also It may well be inappropriate to consider a patient for burden to the patient. Good mouth care is essential and may have a co-morbidity that involves a separate life limiting Cardiopulmonary Resuscitation if the patient is considered to be become the more appropriate intervention rather than attempting near the end of their life. This would include such patients with to feed. Initiating artificial feeding is unlikely to be of overall benefit when someone is dying and therefore will not usually be Access to community services for all those approaching the appropriate. Consider the risks versus the benefits of intravenous end of life so supporting people to die in their home or A Do Not Resuscitate (DNACPR) decision applies solely to
and subcutaneous fluids. If artificial nutrition or hydration has CPR. It should be made clear that all other treatment and care
previously been initiated, consider the appropriateness of which is appropriate for the patient are not precluded and
Advance care planning within primary care to reduce should not be influenced by a DNACPR decision.
unplanned hospital admissions in the last days. This will The decision to withhold, withdraw or continue artificial nutrition include entering the patient onto the palliative care register Decisions relating to CPR for those who lack capacity around the and hydration requires ongoing individual assessment and clear decision must involve family and carer discussions and documentation of the decision making process. incorporate the principles of best interests under the Mental Diagnosis of dying and a multidisciplinary team approach. Use of the All Wales Integrated Care Priorities for dying Available support in older persons’ mental health
Use of the All Wales Integrated Care Priorities for
the dying patient
(OPMH) services:
Symptom control of physical and mental health needs. For the past ten years the all-Wales Integrated Care Priorities (ICP) for the last days of life, is a tool endorsed by the Welsh Psychosocial and spiritual support including carer support. Bodnant OPMH team, Llandudno (West Conwy) government and NICE to deliver high quality end of life care. The ICP is used in hospitals, hospices, community hospitals, nursing Duty CPN 01492 868170 Consultant 01492 868180 Care in the last days of life of someone with dementia should have been planned once that person enters the severe Bryn Hesketh OPMH team, Colwyn Bay (East Conwy) stages of dementia through advance care planning The ICP is based on evidence where available or best accepted Duty CPN 01492 807512 Consultant 01492 807512 practice. The tool is structured around goals of care concerned with symptom management, comfort measures, communication Frequent and open communication with the family and/or with the patient, their family/caregivers and healthcare professionals, spiritual, religious and cultural requirements, Duty CPN 01745 443194 Consultant 01745 443378 bereavement planning and care after death. Specialist Palliative Care Team (CENTRAL) Communication
Identification of the patient who may be entering
Communication is considered a vital aspect of good palliative care the last year of life with advanced dementia
in advanced dementia. There must be frequent and open communication between professionals and with family and carers. Out of Hours (Marie Curie Nursing10 pm -7am) The following advice must be taken within the clinical
Such work is emotive and can be highly challenging. Time and context.
planning is needed for many of the required decisions. Proper consideration is needed for all options and involving all those with Firstly, ask yourself, would you be surprised if this patient
died in the next 6-12 months?
an interest in the person with dementia under the Best Interests Version 2: Sep 2013. Review due Sep 2014
Now look for two or more clinical indicators of advanced
2. Constipation
severe dementia, irrespective of depression. Sexual disinhibition progressive illness.
Progressive deterioration in physical and/or cognitive Always prescribe a regular laxative when starting opioids Common medications include sertraline up to 150mg daily or Speech problems with increasing difficulty Lactulose 5-15ml bd is the recommended first line laxative, if fluoxetine 20mg. Mirtazapine 15-30mg can be useful for its communicating and/or progressive dysphagia. sedative properties if there is sleep disturbance and for its appetite Recurrent aspiration pneumonia; breathless or Titrate laxative to achieve optimum stool frequency and consistency, try to use lowest regular dose Unable to dress, walk or eat without help; unable to Consider other factors that may affect mood such as constipation, pain, poor mobility and falls and a lack of meaningful 3. Agitation, aggression and hallucinations
Needing assistance with feeding/ maintaining nutrition. communication. Treatment failure, severe risks and elation of Most episodes of agitation and aggression in severe dementia can Recurrent febrile episodes or infections; aspiration be managed through clear communication between the care staff, family and patient. Communication difficulties can be challenging to resolve if someone has lost verbal communication. However Access to support services
meaningful interactions are often possible through the use of Assess and plan:
Services exist to assist in preventing inappropriate hospital pictures, textures and touch. Non-pharmacological methods such Review treatment / care plan and medication. admissions. All areas have access to the district nurses seven as aromatheraoy, multisensory stimulation, music, animal assisted Discuss and agree care goals with patient and family. days a week but there is no overnight service and each area has therapy and massage ought to be considered first. Produce care plan, agreed levels of intervention, CPR slightly differing working hours. Fast-track continuing healthcare funding (CHC) can also be requested for those in terminal stages. If a patient is prescribed a memory medication, consideration Enter patient onto both the palliative care and national Urgent social service assessments can be arranged through First ought to given to the appropriateness of continuing that Contact. Each area also has out of hours GP provision. medication. This must be done through secondary care and is Common physical and mental health symptom
Use of the Mental Capacity Act
Physical causes must be actively sought and resolved. Pain, Use of the Mental Capacity Act is required for those with any constipation, urinary tract infections and even relatively small disability of the mind and brain and who are unable to complete at changes in the environment can result in agitation. least one of any of the four conditions with regards to making a 1. Pain control
decision-unable to understand information, unable to use or weigh Patients with advanced dementia may not be able to directly Carefully consider the need for blood investigations balancing the up that information, unable to communicate at all that information express their pain. Pain may be expressed by behavioural change distress to the patient against risk of injury if restraint is required. and/or unable to retain the information long enough to make an only. Utilise a recognised tool for assessing pain in dementia such Ask yourself, will an abnormal result change my management Decisions needed around terminal care in dementia will likely Follow the WHO ladder to prescribe analgesics if required. Have a Consider the timing of agitation and alter times and dose of require such an assessment of capacity. All major decisions for low threshold for using regular low dose mild analgesics. medications around those times to pre-empt such behaviour. individuals who lack capacity must involve a Best Interests assessment, usually with a meeting involving relevant Common medications include trazodone 25mg nocte. Slowly professionals and family. You must consider any previous wishes, eg. Regular Paracetamol (max. 1g qds) or NSAID (Ibuprofen 200- titrate but be careful of falls as it is highly sedating. Citalopram up any advance decisions or statements and try to involve the patient 400mg tds, consider gastric protection with high risk patients). to 20mg daily can be helpful. In acute delirium, a short course of in the decision. Such decisions must be contextual upon the lorazepam 0.5mg-1mg max. qds can be useful. eg. Codeine phosphate (15, 30, 60mg qds) or Cocodamol 30/500 If these fail then refer to older persons’ mental health services It is required in statute law that either a family member or an (OPMHS). It is no longer advisable for antipsychotics to be independent mental capacity advocate (IMCA) is involved in this commenced by primary care for agitation. decision. You must always establish whether the patient has Lasting Power of Attorney (Health and Well Being) since the Most pain in dementia care is not likely to require strong opioids. It is appropriate for patients with hallucinations to be referred to Appointee(s) will have particular authority under the Act to direct Doses must be carefully titrated to avoid over-sedation and falls. OPMHS. If the problem is solely about hallucinations then atypical Transdermal patches should be used with caution and where antipsychotics are generally preferred. Avoid any antipsychotics in Use of covert medications
If the pain remains uncontrolled, seek specialist advice from 4. Low mood and lability of mood
Covert administration involves administering medication in food or Problems with low mood and lability are common in advanced drink without the patient’s awareness in those who lack capacity dementia. This may lead to behavioural problems too. Have a low about the treatment. A fully documented Best Interests decision threshold for considering an SSRI medication. will be needed after discussions with the family and others If there are communication issues ask the carers about biological involved, weighing up pros and cons. The pharmacist should be symptoms such as newly disturbed sleep and change in appetite. contacted for advice on suitable formulations. Weight loss is not a useful indicator as that frequently occurs in

Source: http://www.wamhinpc.org.uk/sites/default/files/dementia-palliative-care.pdf