Oxford Handbook of Palliative Care (2 edn)
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Introduction
The hospital, probably more than any other healthcare setting, is a challenging environment in which to support the human dimension in patient care. The focus is on investigation, treatment and cure; priorities, such as quality-of-life issues, can get overshadowed. Developments, such as the National Cancer Plan1 and the recent emphasis on End of Life Care2 initiatives from the Department of Health, including the widespread introduction of the Liverpool Care Pathway3 for the dying patient, have helped raise the profile of palliative care and have engaged clinicians but there are still many challenges.
Most hospitals in the UK currently have some form of hospital liaison support, varying from a single nurse to consultant-led multidisciplinary teams. Models exist for in-patient hospital beds where the palliative care specialist provides clinical leadership, but the majority of teams work in an advisory capacity and are known as Hospital Specialist Palliative Care Teams (HSPCTs). Many teams have direct relationships with the local specialist palliative care providers, through joint working contracts.
The need for a hospital palliative care liaison service
Some 5–23% of hospital in-patients have been estimated to have palliative care needs at any one time6
The large majority of patients die in hospitals, despite the research clearly showing that the majority of people would want to die at home7
Just under 50% of cancer deaths in the UK occur in hospital, and this percentage is much higher for those with a non-cancer diagnosis. Although some of the factors involved in preventing this need to be addressed within the community, there are also many challenges for hospital services.
These unmet needs are even greater in those patients with a non-cancer diagnosis,10 who, until recently, have not had ready access to specialist palliative care (SPC) support. Although this is changing, the large majority of patients under SPC teams still have a cancer diagnosis. Given the high proportion of patients with non-cancer diagnoses dying in acute hospitals, this is a particular challenge for hospital teams
The ready availability of intensive treatments can skew the balance of patient-centred care and lead to the over-treatment of some patients. Many elderly patients at the end of life prefer a treatment plan focused on comfort11
The majority of complaints received by hospital trusts involve communication problems. The highly emotive situation of end-of-life care, compounds this
Despite these identified needs, HSPCTs have been shown to be under-utilized12
Early recognition of dying, in order to stop investigations and treatments that are not going to impact on outcome and to allow the change in focus which can enable a safe and timely discharge
Recognition of the potential for dying, in order to facilitate discussions around future care preferences
Improving communication skills to support discussions around end-of-life care
Good multidisciplinary team (MDT) structures to support timely assessments and planning for discharge to die at home
Recognition by the MDT that dying at home is possible
The challenges in an acute hospital setting
Busy, stretched staff: in one study, ward nurses had an average of 3 minutes per patient per shift for psychological care13
Lack of consistency in treating teams: e.g. shift working, multiple ward moves, weekly team change-over of junior medical staff, changing consultant team of the week and frequent staff turnover
Variability in models of communication amongst the MDT: there are some good models of MDT working but this is not consistent
Difficulty accessing clinical information: this is particularly important on admission to hospital and when a patient comes to A&E. Good communication between community/hospital teams and hospital/hospital teams is invaluable. The use of electronic records, where available, should facilitate communication. In the absence of this there is no substitute for consulting widely. Inadequate information leads to inadequate care!
Environment: there is frequently lack of privacy; lack of quiet rooms in which to talk; lack of attention of dignity; difficulty accessing outside green spaces; difficulty for loved ones to stay overnight; lack of free and/or convenient parking for visitors
Attitudes and skills: there is variability in knowledge and acceptance of a palliative care approach; generalists may see palliative care professionals as ‘giving up’ on patients; there is fear in prescribing drugs used for symptom control eg. morphine
Bureaucracy as a limit: to creativity and empowering patient-centred choices: strict visiting times; lack of flexibility in food choices
Hospital-acquired infections: with the vulnerable being most at risk
Providing support out of hours: given the small size of many hospital teams and lack of funding, out of hours provision is often inadequate
Aims and evaluation of a hospital specialist palliative care team
Aims
Integrate hospice values and practice into the acute care setting
Be a visible and practical support and resource within the hospital
By working in an advisory capacity, support the needs of both patients and their families
Be dedicated specialists, with the time and focus to truly influence the patient experience
Develop models of MDT working and communication; foster trusted relationships with consultant colleagues and other specialists involved in caring for those patients with advanced progressive illnesses, e.g. clinical nurse specialists working with neurodisabilities, such as Parkinson’s disease, Motor Neurone Disease
Help identify and be present at junctures in the patient’s experience, to ensure review and resetting of treatment plans in the light of (changing) patient preferences, e.g. close working with oncology colleagues by attendance at cancer site-specific MDTs and outpatient clinics; presence at ward rounds or outpatient clinics for e.g. heart failure/end-stage renal disease
Optimize collaborative working with the local community and hospice services. Different models exist which range from joint appointments of staff working across multiple settings, community team attendance at hospital MDT meetings or outpatient clinics, to fully integrated community/hospital palliative care teams
Develop MDT education programmes to raise standards throughout the hospital, covering all aspects of holistic care, e.g. physical, emotional, social, spiritual and ethical elements. Provide informal and formal teaching covering a wide variety of staff, including those at the periphery of patient care who may still be affected and interact with patients, e.g. porters and ward clerks
Provide and/or develop patient information in an accessible form
Promote clear ethical decision-making through joint working with clinicians and education/participation in hospital clinical ethical committees
Promote audit and research to evaluate service and ensure best care
Influence policy development and raise the profile of palliative care within the hospital, through involvement at all levels. It is crucial to engage with management in order to change culture
Represent and participate in hospital and regional groups, e.g. cancer locality groups, cancer or other disease networks
Be a role model and mentor; empower and enthuse professional colleagues and encourage the next generation of palliative care specialists
Evaluation
There are inherent difficulties in evaluating hospital palliative care teams. The evidence-base showing a benefit for HSPCTs is limited,14 reasons for which include the difficulty in evaluating advisory teams, attrition rate of patients and bias, and the clinical complexity of patients with whom palliative care teams are involved e.g. those who have intractable pain or difficult psychosocial problems. However, there are a few established tools, such as the Palliative Care Assessment Tool (PACA) and Palliative care Outcome Score (POS) which have shown benefit from HSPCT involvement in a variety of areas, such as pain, symptom control and patient and carer insight.
Things to think about when considering a referral to the hospital palliative care team
What are your team’s plans for ongoing care?
What treatment options are available?
What are the patient’s wishes for care or place of care?
If there are symptoms, what do you think is the underlying cause and what steps have already been taken to address them?
If the referral is for terminal care, has your team reached a consensus that this is the aim of care? Is this reflected in the care which is being provided?
Have you thought through and identified the specialist palliative care needs of your patient, e.g. difficulties with pain and symptom management, psychological and social needs and dying?
Have you made sure the patient is aware of and in agreement with any referral? This will usually imply a level of understanding of their illness and prognosis
Do you want to refer to the HSPCT or the community SPCT? There may be a separate referral route for the latter
Of course, difficulties in the above areas may be the exact reason why you want to refer to the HSPCT. By thinking these issues through before contacting the HSPCT you will pre-empt their questions!
Urgent discharge of a dying patient who wants to die at home
Sometimes, following sudden realization of a rapid decline, a patient may decide that he/she wants to go home to die. In these changing circumstances, time can be short and clinicians need to be flexible for this to be possible. Steps are outlined below to aid clinicians facilitate safe discharge. There is a new Department of Health Fast Track Pathway process for NHS Continuing Healthcare, which allows speedy access to continuing care support for such patients.
Steps
(Adapted from the resource pack for healthcare professionals from the South West and South East London Cancer Networks, Supportive and Palliative Care Subgroups.)
Communication
Remember to enhance understanding through consideration of first language, learning disability and literacy skills. Use of interpreters or advocates may be needed.
Patient
Ensure it is the patient’s wish to die at home
Explain the level of care available and ensure he/she is aware of limitations in support and the impact of the discharge on carers
Re-check that the patient still wants to go home to die
Family/carer, where possible with patient
Is the family/carer in agreement with the patient’s wishes?
Are they aware of the aims of care and the short prognosis?
Does the family understand the medications?
Ensure the family knows which community agencies will be involved and what their roles and level of commitment are
Give the family contact numbers for ‘in-hours’ and ‘out-of-hours’ GP, district nursing, community palliative care and other involved agencies
Advise the family that when a patient dies at home, they must inform the GP
Ward nurse
Verbal referral supported by fax to district nurse
Nursing letter should include details of the patient’s diagnosis, their nursing needs, medication, poor prognosis, understanding and wishes. Indicate other referrals made
Consider local supports that may be available, including Marie Curie night nursing, hospice-at-home schemes, etc. (Liaise with the HSPCT.)
Provide a letter/form to go with the patient, for the in-hours/out-of-hours district nursing service
Verbal referral supported by faxed referral/update to the Community Specialist Palliative Care Team (CSPCT)
If patient is oxygen-dependent, check adequate oxygen availability at home. If not, ensure arrangements are made for home oxygen through local policies. There is the facility for urgent provision, where time is short
Ensure urgent referral for Continuing Care Category 1 utilizing the Fast Track Tool, to optimize the level of care available. The more detailed form can follow on after discharge
Ensure regular liaison with MDT members involved in the patient’s discharge from hospital discharge, e.g. coordinators, occupational therapists, etc.
Book ambulance: ensure the ambulance service is aware that the patient is not for resuscitation, and that a written DNAR order is with the patient (e.g. in the form of a letter, or a copy of the hospital DNAR order; local policies will apply)
Liaise with the HSPCT for advice and support
Doctor
Verbal update supported by fax to the GP ± out-of-hours GP service. Emphasize the patient’s wish to die at home. List the medications. Ensure an early review by the GP who will also need to undertake death certification
Complete and fax out-of-hours handover forms, where available, to local GP out-of-hours service and, where agreements exist, the local ambulance service
Ensure DNAR form is both signed and current
Medication
Doctor
Prescribe at least 1 week of oral medication. Include p.r.n. analgesia and antiemetics
Even if the patient can swallow on discharge, they are likely to become unable to swallow in the near future, so subcutaneous medication must also be prescribed
Prescribe regular medication needs for delivery via syringe driver, plus p.r.n. medication needs for possible distressing symptoms. (
see Chapter 16, The terminal phase). Remember also to prescribe water for injection
Doctors must write a prescription chart for the syringe driver and p.r.n. SC medications to go home with the patient, so that district nurses can administer medications. This can be in the form of a letter or utilization of local charts, as available
Nurse
Provide a written medication chart to go home with the patient. Include information about the reason for the medication, dosage and frequency
Explain to the patient and family and ensure understanding
Equipment
Ward nurse’s responsibility for equipment needed for discharge:
For patients with a syringe driver, either:
supply a clearly labelled syringe driver for early return by district nurse, or other explicit arrangement; or:
give stat medications prior to transfer to cover the known symptoms and arrange for the district nurse to set up the syringe driver shortly after the patient’s arrival at home
When sending the patient home with a hospital syringe driver, Remember to include:
a spare battery
a range of Luer-lock syringes: 2mL, 10mL, 20mL, 30mL (×4)
needles: orange, blue and green (×4)
syringe driver lines (×4)
Tegaderm (×4)
labels for barrel of syringe
water for injection
sharps box (×1)
For patients with additional needs discuss with the district nurses the need for:
dressings (×4)
incontinence pads
catheter bags for patients who are catheterized
colostomy/ileostomy/ileal conduit bags
vomit bowls
urine bottles, bed-pan, commode
hospital bed/mattress
gloves, apron
mouth sponges
It may not be possible to provide all the equipment, but don’t let this stop you from fulfilling the patient’s wishes. Where items are not available, discuss possible solutions with district nurse/patient/family. Communication is key to a successful discharge
At any stage, liaise with the HSPCT for advice and support
A 95-yr-old widower was admitted to hospital with pneumonia. He had had previous strokes, which significantly affected his mobility. He lived alone and had no children or close family. Early in the admission he said that he didn’t want any more treatment and wanted to be allowed to die.
His infection caused intermittent confusion and the treating team were concerned that he did not have capacity to refuse treatment. They felt he could benefit from treatment and so continued to offer antibiotics. He then became increasingly distressed and mistrustful of staff and started to refuse all treatment, including symptomatic measures such as pain control. He was referred to the HPCT for symptom control, support and in the knowledge that, despite their efforts, he was probably dying.
On meeting him, the HPCT were able to talk through his understanding of his condition and his wishes for care. He had nursed his wife through a long illness and saw her death as a blessing. He had also lost close friends recently. He felt he had a poor quality of life due to his strokes and did not want to prolong his life any more. He had agreed to come in to the hospital so he could die in a place of safety, but he had not anticipated the battle to keep him alive. He understood there would be friends who would be upset by his dying, but said he had spoken to them and said his goodbyes. He was, at that moment, competent in his refusal of life-sustaining treatment. He also had many other symptoms that had either not been addressed (nausea, shortness of breath associated with his anxiety, constipation), or had been inadequately managed (regular analgesia had been prescribed, but he had refused). The HPCT were able to talk through his drug chart, rationalize medication for comfort only and spoke with staff so they would explain clearly what was being given.
By meeting with the treating team, the team were able to clarify aims of care and to ensure consistency of care. This reassured him. He did not want a single room, as he liked the activity of the open ward. He deteriorated steadily and within 24 hours was started on the Liverpool Care Pathway for the dying patient. A syringe driver and p.r.n. medications were advised and he died comfortably a few hours later.
Dying in the intensive care unit (ICU)
A large number of patients who die in hospital spend some time on the ICU during their last admission.15 But the experience of dying on an ICU is reported as variable, with a high prevalence of symptoms and poor communication around the end-of-life preferences. In such an aggressive treatment environment focused on saving life, ensuring a peaceful death may get lost as a central goal of clinical care.
In the US SUPPORT (the Study to Understand Prognosis and Preferences or Outcomes and Risks of Treatments) study7, from the perspective of bereaved relatives, 60% of patients would have preferred comfort care. Poor communication around end-of-life issues may, therefore, influence admissions to ICU and lead to invasive treatment which does not always follow patients’ wishes.
A study that looked at the quality of dying in an ICU, from the perspective of bereaved relatives, showed that 24% of patients were never aware of dying and that 34% were only aware in their last week of life.
The most important aspects of the perceived quality of dying were good pain control, being prepared for death, having control over events, feeling at peace, maintaining dignity and self-respect.
More than 70% of deaths on an ICU can be predicted, e.g. by withdrawal of treatment that has failed. Withdrawal of treatment can precipitate, in some circumstances, a very rapid death within minutes to hours. Some patients will be stable enough to be transferred to other areas.
HSPCTs clearly have a role in supporting end-of-life care in an ICU and the challenge is to develop relationships with ICU colleagues to allow this. Opportunities include: developing joint education programmes to raise the profile of a palliative care approach, for it to be seen as a core goal of care, not a failure of care; ensuring clear criteria for referral to HSPCTs; looking at models of MDT working; adapting approaches to the dying phase in the light of the often fast clinical deterioration and by highlighting variations in routes and types of medications needed.
The National Liverpool Care Pathway Centre has developed an ICU version of the LCP which is currently being evaluated. The HSPCT can actively support the transition of dying patients who are transferred from ICU to other settings. Throughout the hospital, the team has a role in promoting the need for early communication around end-of-life preferences with patients, enhancing their control over events and supporting the staff in the communication skills needed in these difficult situations.
Using the Liverpool Care Pathway for the dying patient (LCP) in the hospital setting
The LCP was originally developed to bring the hospice model of care of the dying to the acute hospital setting. It has since been disseminated to other settings and is one of the three End of Life Care initiatives promoted by the Department of Health.
Experience with the LCP in the acute hospital setting shows that more than 50% of dying patients have a non-cancer diagnosis, so it is successfully reaching patients who have not previously accessed hospice care.
There is widespread enthusiasm amongst staff who feel they are empowered by the LCP ( see box, p. 942). Senior doctors are given flexibility within the Variance to allow individualized care and clinical judgement. Within an acute hospital setting, it is essential to ensure senior medical involvement in the decision to start the LCP, and this is ensured by the paperwork requiring the consultant or their agreed deputy (usually the specialist registrar) to agree.
The structure of the tool is welcomed by busy ward staff. It provides an effective audit and educational tool, which also reinforces other palliative care education programmes. Analysis of Variances can help reflection and support learning. However, it is essential to monitor quality beyond the purely paper assessment, and sustaining the LCP in a busy hospital with large staff turnover has its challenges. Although a tool for generalists, its implementation has been largely led by the HSPCTs.
One of the challenges, especially in the treatment-focused hospital, is the recognition of dying and patient involvement in decision-making. There is a need to raise skills in communication at the end of life as well as using ethical frameworks for reflection and decision-making.
…‘a very good tool to explain to the family care of the dying patient and reassure them about the existence of such a protocol’
Pre-registration house officer in care of the elderly
‘I find it simple and easy to understand. I don’t miss any care or comfort measures for the patient and family, as everything is there to remind me’
Sister, Medical Unit
‘The thing I like about the LCP is that a firm decision is made by the team and you don’t get a half-hearted approach to terminal care’
Medical Pre-registration house officer
‘Having a specific plan of nursing care for the patient facilitates open communication with the family’
Staff nurse, Medical Unit
‘I have noted that it has improved the confidence of ward nurses in dealing with dying patients and their families’
Staff nurse, Medical Unit
Kingston Hospital Pride of Nursing Prize 2007
Further reading
Articles
