Trust Guideline/Protocol/Procedure template TW15
North Tees and Hartlepool NHS Foundation
Section B: Guideline for completion of Caring for the Dying patient (CFDP) Section A
Contents
Section B (i): Explanatory notes
1. Introduction (Page 1)
2. Information about use of CFDP documents (Page 2)
3. Examples of how to document clinical decision-making regarding diagnosis of dying and commencement of end-of-life care plan (Pages 2-3)
4. Documentation of specific concerns or requests from family regarding patient’s
care (Page 3)
5. DNACPR documentation (see Trust (NTH) Cardiac Resuscitation Policy C23 (based on BMA/RC/RCN guidelines and Deciding Right) (Page 3)
6. Mental Capacity Act (MCA) (2005) (Pages 3-4)
7. Review of patient’s usual medications (Page 4)
8. Nutrition and hydration (Pages 4-5)
9. Summary of medical care plan (Pages 5-6)
10. Discharging patients home to die (Pages 6-7)
11. Glossary of terms/abbreviations in this document/Palliative Care practice (Page 8)
Section B (ii): CFDP Clinical Guidelines (page numbers in brackets)
1. Family’s Voice (Page 9)
2. Breathlessness at End of Life (Page 10)
3. Breathlessness at end of life (renal failure present) (Page 11)
4. Nausea and/or vomiting at the end of life (Page 12)
5. Pain at the end of life (Page 13)
6. Pain at the end of life in patients with renal failure (Page 14)
7. Pain at the end of life – supplemental information (Page 15)
8. Strong opioids used as alternatives to morphine (Page 16)
9. Restlessness / agitation at the end of life (Page 17)
10. Respiratory tract secretions at the end of life (Including guidance in renal failure) (Page 18)
11. Diabetes management at the end of life (Page 19)
12. References (Page 20)
1. Introduction
This document has been developed by the North Tees and Hartlepool NHS Foundation Trust’s Task and Finish Group for the Care of the Dying Patient. The Neuberger Report in July 2013 (‘More Care, Less Pathway’), was a Government-commissioned, independent review of the Liverpool Care Pathway (LCP). The ultimate outcome of the report was that, from July 2014, the LCP should no longer be used in any healthcare setting.
Section B (i): Caring for the Dying Patient (CFDP) Explanatory notes
2. Information about use of CFDP documents
The group has developed a comprehensive set of documents to enhance the care of dying patients:
2.1 This CFDP document
2.2 The “When Someone is Dying” leaflet for relatives (to be given out in conjunction with the Family’s Voice diary)
2.3 The Palliative Care Medication Chart.
2.4 The drug chart has been designed so that it can be used for palliative patients at any stage of their illness, in both hospital and community settings.
2.5 The diagnosis of dying, and the decision to commence use of the CFDP document should be a multi-disciplinary decision, led by a senior clinician.
2.6 See Algorithm: Diagnosing dying and supporting care in the last hours or days of life. (Caring for the Dying Patient: Section A: Page 2)
3. Examples of how to document clinical decision-making regarding diagnosis of dying and commencement of end-of-life care plan
Making a diagnosis of dying is not an exact science, and there exists a degree of uncertainty whenever we do so. For this reason, it is essential that as much information as possible be taken into consideration when making the diagnosis, and that those caring for the patient ensure that all reversible causes have been addressed where appropriate. It is also of paramount importance that this uncertainty is communicated to patients and/or families, whilst being as precise and open as possible.
Example 1
“Despite treatment of sepsis with IV antibiotics and IV fluids, patient has continued to deteriorate”
Example 2
“Patient has deteriorated rapidly over last 36 hours. No evidence of sepsis or abnormalities on blood tests to explain deterioration. Patient felt to be dying of disease burden”
Example 3
“Patient with end-stage motor neurone disease with worsening type 2 respiratory failure. Patient has Advanced Decision (ADRT) which specifies refusal of invasive or non-invasive ventilation”
Example 4
“Patient has end-stage cardiac/renal/hepatic failure and is deteriorating despite maximal medical therapy and/or is not suitable for/declines/is discontinuing intervention (e.g. dialysis)”
Section B (i): Caring for the Dying Patient (CFDP) Explanatory notes
Example 5
“Patient has life-threatening acute condition (e.g. ruptured abdominal aortic aneurysm, bowel perforation/obstruction) and surgery is either not possible/appropriate, or patient has declined surgery”.
4. Documentation of specific concerns or requests from family regarding patient’s care
This section should include any particular worries the family may have about previous or ongoing care, or specific requests for their future care, i.e. preferred positioning, limiting frequency of turns/personal care if they cause patient distress, etc.
5. DNACPR documentation (see Trust (NTH) Cardiac Resuscitation Policy C23 (based on BMA/RC/RCN guidelines and Deciding Right)
For the overwhelming majority of patients who are thought to be in the final days of life (unless there is potentially reversible pathology), cardiopulmonary resuscitation will not be appropriate, as it would be medically futile.
There is sometimes a misconception that all DNACPR decisions must be discussed with patients and/or their families. It is clearly good practice to be open and honest with patients and their families, and as part of advising patients/families about their overall condition and prognosis, it may be appropriate to discuss with them the DNACPR decision. If the DNACPR form is not discussed the reason should be documented in the notes e.g. “family not present/patient extremely anxious and discussion felt inappropriate”.
If it is thought that, in the event of a cardiorespiratory arrest, there is a reasonable chance of successful resuscitation (e.g. localised disease/good performance status), then it may be appropriate to discuss this with the patient, and ascertain their views and wishes. However, the clinician should approach discussions sensitively and carefully, and not pursue conversations with which patients or their relatives are not comfortable.
DNACPR forms do have to be discussed with patients (or their families if the patient lacks capacity) if the patient is to be discharged home, as it can only be sent home if there is consent from the patient (or family).
6. Mental Capacity Act (MCA) (2005)
The Mental Capacity Act was introduced in 2007. It provides a clear and comprehensive legal framework to guide clinical decision-making for people who lack mental capacity, and is governed by five key principles:
6.1 Presumption of capacity (unless proved otherwise)
6.2 Supported decision-making (all reasonable efforts to be made to enhance capacity)
6.3 Acceptability of unwise decisions
A patient with capacity has the right to make ‘the unwise or seemingly eccentric decision’,
6.4 The requirement of best interests
Any action or decision made on behalf of a person who lacks capacity must be in their best interests.
Section B (i): Caring for the Dying Patient (CFDP) Explanatory notes
6.5 Least restrictive interventions
“A person lacks capacity on an issue if, because of their brain or mind dysfunction, they cannot understand, retain and use the relevant information to reach and then communicate their decision on that specific task at that time”.
For further information please refer to the Trust Policy: Mental Capacity Act Policy/Deprivation of Liberty Safeguards (DoLS): C53.
7. Review of patient’s usual medications
When a patient is thought to be in their last days of life, it is essential to review their usual medications, as certain drugs should continue to be given or an alternative sought (e.g. analgesia, anticonvulsants, anxiolytics). It is essential to review the potential benefits of each drug in turn, and where possible, to continue those that will provide benefit in terms of symptom control/quality of life. Transdermal patches (e.g. fentanyl, buprenorphine, or patches for neurological conditions etc) should usually be continued. If the patient has diabetes, please refer to the Diabetes in Palliative Care guidelines (see Section B (ii): CFDP clinical guideline 11. Page 19).
Please contact the Specialist Palliative Care Team for advice if you are uncertain about how best to rationalise the patient’s medications.
8. Nutrition and hydration
8.1 Oral Nutrition and hydration
Many patients who are nearing the end of life will experience decreased interest in eating and drinking. As they become more unwell, the muscles involved in swallowing become weaker, and so patients may potentially be at risk of aspiration. However some patients may wish to eat and drink, even if there may be a risk of aspiration. Provided all reasonable attempts are made to communicate to the patient/family what the risks are, and provided that these risks (e.g. distress to the patient) do not outweigh the benefits, patients should not be prevented from eating and drinking if they wish to.
8.2 Clinically-assisted nutrition
For patients who are unable to eat for mechanical (eg head and neck or upper GI tumours) or neurological reasons, it is essential to consider (and discuss with patient and family) whether continuing or starting clinically assisted nutrition/hydration is appropriate. In a patient with a good performance status, or where patients are feeling hungry, it would generally be inappropriate to withhold/withdraw interventions such as PEG/PEJ feeding. For a patient who has been receiving total parenteral nutrition (i.e. via a central line, TPN), weighing up whether this should be continued is a decision that needs extremely careful consideration. It is an invasive intervention, requiring monitoring of blood tests, and with risks of complications such as infected central lines and fluid overload, and may have more burdens than benefits.
Section B (i): Caring for the Dying Patient (CFDP) Explanatory notes
8.3 Clinically-assisted hydration
For patients who have become too sleepy to manage oral fluids, or to sustain an adequate fluid intake, it is understandable that their families may be concerned about them becoming dehydrated, and the suffering this may cause. Many families may request that their relative is given intravenous (IV) or subcutaneous (SC) fluids as they near the end of life. If a patient has become unconscious, they will not be aware of thirst, although careful attention to meticulous mouth care remains a priority at all times. In addition, for a patient whose urine output is reducing as part of the dying process, giving fluid parenterally (IV or SC) may lead to fluid overload, resulting in limb oedema and excess respiratory secretions. A careful and sensitive explanation of the risks and benefits of parenteral hydration should be offered to the family.
However, if a patient is unable to manage fluids for physical/mechanical reasons (e.g. head and neck malignancy, bowel obstruction) and is feeling thirsty, then it may be appropriate to give intravenous or subcutaneous fluids. This should be monitored, however, and stopped if there is no symptomatic benefit or the risks start to outweigh the benefits. Please refer to the Trust Policy C27: Hydration Management and the Administration of Fluid Therapy in Adults.
9. Summary of medical care plan
Whilst predicting life expectancy is not an exact science, the recognition that a patient is approaching the end of life should be considered a diagnosis in its own right. Therefore, it requires a specific management plan, tailored to the needs of the patient, in much the same way as a patient being admitted to hospital with an acute/serious medical or surgical condition would require a management plan.
Completing this document requires the recording of a large amount of information. It is helpful to summarise the overall plan for each patient, so that those not familiar with the patient (e.g. an on-call doctor), can, at a glance, access the key points with regards the patient’s management plan.
Please see the example on the following page (Section B (i): CFDP Explanatory notes. Page 6) of the types of issues that it would be helpful to summarise when the initial medical assessment has been completed (clearly, this will vary depending on the individual patient’s clinical condition and circumstances).
Section B (i): Caring for the Dying Patient (CFDP) Explanatory notes
SUMMARY OF MEDICAL CARE PLAN
Key issues:
· Pain (opiate-responsive)
· Agitation/confusion
· Marked renal impairment (eGFR 11)
· Urinary retention
· Type 1 (insulin-dependent diabetes)
· On long-term steroids
· Bowel obstruction with symptomatic dehydration
Specific management plan for this patient
· Commence syringe driver with midazolam and haloperidol
· Continue fentanyl patch, but add alfentanil to syringe driver in line with prn requirements
· Switch to long-acting once-daily insulin (as per guidelines/Diabetes Specialist Nurse advice)
· Catheterise
· Give steroids by alternative route (syringe driver/subcutaneous injection) to avoid steroid withdrawal
· Continue IV/SC fluids for symptom control, but review frequently and stop if patient becomes unconscious/fluid-overloaded.
10. Discharging patients home to die
For some patients who know they are nearing the end of life, with no active treatment options, they and their families may wish for them to go home to die. Facilitating this requires the focused input of the whole multi-disciplinary team in order to make the process as efficient and speedy as possible, but still addressing the full range of their holistic needs. This includes:
10.1 Ordering relevant regular medications and anticipatory injectable drugs (including water for injection), and ensuring that these are prescribed on a separate Palliative Care Medication chart for discharge
10.2 Ordering equipment.
10.3 Assessing whether a care package is needed; and how this will be funded
10.4 Advising patients and families of what to expect (as far as can be anticipated)
10.5 Ensuring that patients and their families are given clear information about whom to contact in the event of needing urgent help.
It is crucial that the community team is made aware of the rapid discharge. A referral should be faxed to the Single Point of Access, but this needs to be accompanied by a verbal referral.
Section B (i): Caring for the Dying Patient (CFDP) Explanatory notes
The patient’s GP should be notified by telephone of the discharge, and asked to visit as soon after discharge as possible. It is important that the GP is always in a position where they have seen the patient within the last fortnight, as if they have not, it may lead to delays in getting the death certification paperwork done. Furthermore, it may mean that the Police and Coroner have to be involved, adding to the distress of a grieving family.