What is the DCHS Care Pathway for Last Days of Life-V1.00-0297-TRE-CHOSP /
Version No / 1
Version Date / 01/09/10
Review Date / 01/10/11

Supporting information when using a care pathway approach.

What is the DCHS Care Pathway for the Last Days of Life?

Over the past few years a major drive has been underway to ensure that all dying patients and their relatives and carers receive a high standard of care in the last hours or days of their life. The DCHS Care Pathway for Last Days of Lifeis based on the National tool “The Liverpool Care Pathway”, and evidence based practice and provides a single approach across Derbyshire Community Health Services to the management of this period of care.

Key messages for the health and social care professional using the DCHS Care Pathway

THERE IS ONLY ONE DOCUMENT FOR ALLCARE SETTINGS

  • The care pathway is only as good as the teams using it. As with all clinical guidance and pathways the DCHS care pathway aims to support but does not replace clinical judgement.
  • Guidance is provided to support the management of adverse symptoms. This should be consistent with local policy and is not intended to replace clinical judgement. In certain circumstances i.e. renal impairment or diabetes symptom management may be complex. Consideration should be given to discussion with the specialist teams.
  • The DCHS Care Pathway does not replace all documentation, it is intended to be used with other key documents i.e. medical and medication records, moving and handling and tissue viability assessments.
  • The DCHS care pathway neither hastens nor postpones death.
  • Using the DCHS Care Pathway in any environment requires regular assessment and involves regular reflection, challenge, critical senior decision-making and clinical skill, in the best interest of the patient.

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  • The recognition and diagnosis of dying is always complex; irrespective of previous diagnosis or history. Uncertainty is an integral part of dying. There are occasions when a patient who is thought to be dying lives longer than expected and vice versa. Seek a second opinion or specialist palliative care support as needed.
  • Changes in care at this complex, uncertain time are made in the best interest of the patient and relative or carer, and needs to be reviewed regularly by the multidisciplinary team (MDT).
  • Good, comprehensive and clear communication is pivotal and all decisions leading to a change in care delivery should be communicated to the patient where appropriate and to the relative or carer. The views of all concerned must be listened to and documented.
  • Where possible the patient, family and those significant others (with the patient’s consent) should be offered a full and active part in communication concerning the proposed plan of care.
  • Information leaflets are available for the relative or carer following a discussion regarding the plan of care.
  • Barriers that have the potential to prevent communication must be assessed and relevant action taken i.e.
  • Consider the need for an interpreter, hearing, vision, speech, learning disabilities, dementia (use of assessment tools), neurological conditions and confusion. The relative or carer may know how specific signs indicate distress if the patient is unable to articulate their own concerns.
  • Does the patient have:-
  • An advance care plan?
  • An expressed wish for organ/tissue donation?
  • An advance decision to refuse treatment (ADRT)?
  • Does the patient have the capacity to make their own decisions on their own treatment at this moment in time?
  • Is there an identified lasting power of attorney for the welfare needs of the person concerned?
  • Consider the support of an Independent Mental Capacity Advocate (IMCA).

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  • If a goal on the DCHS Care Pathway is not achieved this should be coded as a variance. This is not a negative process but demonstrates the individual nature of the patient’s condition based on their particular needs, your clinical judgement and the needs of the relative or carer.
  • For the purpose of this DCHS Care Pathway, the term best interest includes medical, physical, emotional, social and spiritual and all other factors relevant to the patient’s welfare.

REMEMBER

  • Reflect, Audit, Measure and Learn
  • Stop, Think, Assess and Change

Multidisciplinary Team (MDT) Decision Making

As a minimum the MDT is usually a doctor and a nurse but may include other healthcare professionals/ other personnel as appropriate.

The recognition and diagnosis of dying is always complex; irrespective of previous diagnosis or history. The DCHS Care Pathwayincludes a helpful algorithm(Appendix 1) to support the clinical decision making process regarding recognition and diagnosis of dying and the use of the Care Pathway in the last hours or days of life.

The MDT assessment will include the following:

  • Is there a potentially reversible cause for the patient’s condition e.g. exclude Opioid toxicity, renal failure, hypocalcaemia, infection.
  • Could the patient be in the last hours or days of life?
  • Is specialist referral needed? E.g. specialist palliative care or a second opinion.
  • Are all relevant documents completed i.e. DNAR /EMAS end of life Care Decision form, Nurse verification of expected adult death.

If the patient is diagnosed as dying (in the last hours or days of life) then this should be communicated appropriately. Good, comprehensive and clear communication is pivotal and all decisions leading to a change in care delivery should be communicated to the patient where appropriate and to the relative or carer. The views of all concerned must be listened to and documented. All decisions must be documented accordingly on the DCHS Care Pathway.

This process should reflect other elements of healthcare clinical decision making.

For example: The decision is made to record a do not attempt cardiopulmonary resuscitation order. This decision must be made by the most senior healthcare professional immediately available in the environment and documented according to local policy and procedure within the organisational governance framework. This decision is then endorsed by the most senior healthcare professional responsible for the patient’s care at the earliest opportunity.

The DCHS Care Pathway calls for the same decision making process to be followed when diagnosing dying and commencing the DCHS Care Pathway.

Care Settings

The use of a single approach regardless of care setting, requires consideration of a number of factors as some of the goals may relate more to specific locations. i.e. Goal 8 which is specific to the hospital setting.

The ongoing assessments in Section 2 (Focus Patient Care) of the DCHS Care Pathway for the community setting (i.e. the patient’s own home/ residential placement) will be recorded per visit rather than 4hourly timed assessments in an inpatient care setting where there is 24 hour trained nursing care.

Nutrition

The patient should be supported to take food by mouth for as long as tolerated and safe to do so.

  • The DCHS Care Pathway does not preclude the use of clinically assisted (artificial) nutrition. All clinical decisions must be made in the patient’s best interest.
  • A blanket policy for giving assisted (artificial) nutrition is ethically indefensible and in the case of patients lacking capacity is prohibited under the Mental Capacity Act (2005).
  • A full assessment of the patient’s needs for this intervention is required and communication with the patient, where possible, and relative or carer is essential at this moment in time.
  • For many patients the use of clinically assisted (artificial) nutrition will not be required but again this decision must be made in the patient’s best interest.
  • A reduced need for food is part of the normal dying process.
  • If clinically assisted (artificial) nutrition is already in place please record route i.e. Naso-Gastric, PEG/PEJ.
  • Consider continued requirement, or reduction in rate / volume according to individual need if nutritional support is in place.
  • Explain the plan of care to the patient where appropriate, and to the relative or carer (Information leaflet available).

Fluids

The patient should be supported to take fluids by mouth for as long as tolerated and safe to do so.

  • The DCHS Care Pathway does not preclude the use of clinically assisted (artificial) hydration. All clinical decisions must be made in the patient’s best interest.
  • A blanket policy for giving assisted (artificial) hydration or for not giving clinically assisted (artificial) hydration, is ethically indefensible and in the case of patients lacking capacity is prohibited under the Mental Capacity Act (2005).
  • A full assessment of the patient’s needs for this intervention is required and communication with the patient, where possible, and relative or carer is essential at this moment in time.
  • For many patients the use of clinically assisted (artificial) hydration will not be required but again this decision must be made in the patient’s best interest.
  • A reduced need for fluids is part of the normal dying process.
  • Symptoms of thirst / dry mouth do not always indicate dehydration but are often due to mouth breathing or medication. Good mouth care is essential.
  • If clinically assisted (artificial) hydration is already in place please record routei.e IV, Sub-Cutaneous.
  • Consider continued requirement, or reduction in rate / volume according to individual need if hydration support is in place.If required consider the sub/cutaneous route.
  • Explain the plan of care to the patient where appropriate, and the relative or carer (Information leaflet available).

See Appendix 2.

National Council for Palliative Care “Artificial Nutrition and Hydration – Summary Guidance”

The ‘variance’

Variance (exception reporting) in the care pathway is a mechanism by which a seemingly process driven approach to care can be tempered in line with individual patient need. The potential to use clinical skill and judgement to deviate from the suggested plan of care in response to individual patients makes the Care Pathway a more flexible and practical document.

Variance provides other clinicians in the environment with a clear picture regarding the choices made and the care delivered. Focusing specifically on the variance sheets allows clinicians to see at a glance what the major issues have been for the patient (and relative or carer) over a given period of time.

When variance recording is studied over a cross section of patients, it can also highlight organisational or educational issues that may be impacting on the delivery of care in a given environment. Taking care to document carefully on the variance sheet can, therefore, provide a wealth of important information for clinicians and managers alike.

Failing to document variance appropriately tells us nothing!

Variance recording tells the true story of the patient’s journey/ condition. If the variance is not completed then we do not have documented evidence of the care that was delivered, nor the care that requires action.

A coded variance must be accompanied by a written explanation on the variance sheet within the DCHS Care Pathway whenever there is a deviation from the care pathway. The reason for the variance must be completed and the subsequent action recorded. At an appropriate time the action should be evaluated and the outcome also recorded. It is acknowledged that there may be a time difference between action and evaluation for some variances. On completion of the care pathway at the time of the person’s death “variance analysis“ may be undertaken, this will focus on the frequency of observations and the relevance of any action taken. Ultimately, the results of this analysis will support professional development.

The Goal Data Dictionary Appendix 3. enables a more explicit and robust understanding of the core meaning of each of the goals of care and the rationale, required behaviour and correct coding of information following observation. A coded variance must be accompanied by a written explanation on the variance sheet within the DCHS Care Pathway.

Appendix 2

Artificial Nutrition and Hydration – Summary Guidance

In May 2007 The National Council for Palliative Care (NCPC) and the Association for Palliative Medicine publishedArtificial Nutrition & Hydration: Guidance in End of Life Care for Adults. This is a summary of that Guidance. It identifies some of the practical, legal and ethical issues that may arise when artificial nutrition and hydration is being considered.

Artificial nutrition and hydration (ANH) has the potential to prolong life, and improve general well being. For some patients with life threatening illnesses this may be advantageous even if the underlying disease process continues to deteriorate. However, in some circumstances, giving ANH will only prolong the period of suffering. As ANH is regarded legally as a medical treatment, a clinician should only offer it if he/she thinks it is in the patient’s best interest. In addition, a clinician cannot be compelled to prescribe ANH if he/she does not believe it to be in the patient’s best interests.

  • A blanket policy of artificial nutrition or hydration, or of no artificial nutrition or hydration, is ethically indefensible and, in the case of patients lacking capacity, prohibited under the Mental Capacity Act 2005).
  • Artificial nutrition may prolong survival in cancer patients who have difficulty in swallowing due to a local cause e.g. obstructing tumours such as throat cancers. However, for patients with cancer cachexia or those with other conditions near to death, there is no evidence that artificial nutrition lengthens survival or improves quality of life.
  • Artificial hydration is unlikely to influence survival for patients with advanced cancer and those with other conditions who are near to death. However, it may have a limited place on a trial basis, in treating those who have thirst who are near to death but still conscious or semi-conscious. It is important to note, however, that dry mouth for such patients is often caused by mouth breathing and medication, and this will not be helped by artificial hydration. Good mouth care is more appropriate in this situation. Also for these patients, parenteral (given via a drip) fluids have the potential to exacerbate oedema (swelling) and increase transudates (leakage) in other body spaces.
  • Some advanced neurological conditions may compromise the ability to swallow, for example motor neurone disease. Patients with these conditions should be helped to discuss whether they wish ANH before they become unable to swallow, by being given the full information regarding risks and benefits. This should be a part of the advance care planning process for all such patients.
  • Where swallowing is unlikely to be compromised even towards the end of life, for example for people with heart failure or advanced respiratory disease, then decisions about ANH may not arise. However the ability to swallow can be reduced for patients with any other conditions such as advanced dementia or stroke. As with cancer, the potential benefits and burdens of ANH for such patients need to be carefully assessed on an individual basis.

In assessing whether to give ANH, each case needs to be individually assessed to determine what is in that person’s best interests. This applies to all forms of ANH however it is administered. Best interest decisions will include an assessment of the benefits and burdens of ANH to the patient.

Is there a difference between the fitting of a feeding tube and passing of food and fluids down it?

No distinction should be made, ethically or legally, between withholding feeding tube insertion in the first place, and withdrawal of feeding through the feeding tube, in other words food and fluid passed through a feeding tube is considered medical treatment along with the insertion of the tube itself.

For a patient who is already established on PEG (percutaneous endoscopic gastronomy – a feeding tube passed through the abdominal wall into the stomach) feeding it is usually appropriate to have a frank discussion with the patient if he/she has capacity as to if, or in what circumstances, feeding will be withdrawn. If the patient lacks capacity, it is necessary to try to determine what is in the patient’s best interests. This should take into account the views of those “interested” in the welfare of the patient’ (under the Mental Capacity Act) as to where the patient’s best interests lie.

Thus, an appropriate agreement might be to continue feeding though the tube until death is thought to imminent in the following few days. In practice, it might prove to be in the patient’s best interests to reduce the volume of nutritional fluid being passed through the feeding tube as patients who are near to death often become unable to tolerate the same volume.

It might also be agreed that fluids will be continued until the patient loses consciousness prior to death. Again, this would have to be in the patient’s best interests as there are associated risks including swelling and leakage.

Do imminently dying patients suffer hunger and thirst without ANH?

* High quality evidence in this area is limited and chiefly focuses on people with cancer but it is important to note that experience in palliative care suggests that most imminently dying patients die peacefully and comfortably without artificial fluids. In particular, thirst or dry mouth in people who are terminally ill may frequently be caused by medication, when artificial hydration is unlikely to help. Good mouth care and sensible prescribing is more important. However, for patients who are conscious or semi-conscious and complaining of thirst, it may be beneficial to give a trial of parenteral fluids to see if this helps. Some patients may suffer confusion and agitation as part of the dying process. Associated agitation can be treated pharmacologically as appropriate.