5 Holistic assessment and palliative care planning

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When you have completed this chapter you should be able to:

  1. Explain the concept of holistic assessment.
  2. Explain the importance of holistic assessment in children’s palliative care.
  3. Identify a child’s physical, emotional, social and spiritual needs.
  4. Explain the goals of care planning.
  5. Explain the types of different care plans used in children’s palliative care.
  6. Design an advance care plan for a child with progressive illness.

Holistic assessment

5-1 What does the word holistic mean?

Holistic means whole or complete. In healthcare, it means considering the complete person and all their needs in the treatment of their illness.

5-2 What does assessment mean?

Assessment is the process of gathering all the information related to the person and how they function within the community around them.

5-3 What is a holistic assessment of a child?

Holistic assessment of a child means gathering all the information about the physical, psychological, social (psychosocial) and spiritual needs of the child and includes the child’s family.

Holistic assessment is an assessment that includes the physical, psychosocial and spiritual needs of a child and involves the family.

5-4 Do children need to be assessed holistically in children’s palliative care?

Yes. Assessing a child in a holistic way means looking at the child as a ‘whole’ human being. In order to improve the child’s quality of life and relieve any suffering, all the child’s needs should be identified in all areas of their life.

The definition of children’s palliative care states that it is the total care of the child’s body, mind and spirit and involves giving support to the family. Therefore, all these aspects must be included in assessment.

5-5 What do we mean when we say body, mind and spirit?

These are the areas that make us whole or complete as a person and how we function within a family and society:

5-6 Why is a holistic assessment important?

Holistic assessment forms the foundation on which the interventions and management are planned and a care plan for the child and family established. Assessment is linked to integrated delivery of care that will be provided by healthcare providers.

Holistic assessment is important as it will identify the interventions that are required to plan the integrated delivery of care to the child and family.

5-7 What are the aims of a holistic assessment?

The aims of a holistic assessment are:

A holistic assessment should be a process and not a single event.

The aim of a holistic assessment is to develop a problem list of all of the the child’s needs and develop a care plan specifically for that child and family.

5-8 What makes a good assessment?

A good assessment should take note of the following:

A good assessment is child and family centered and requires time, good communications skills, empathy and a non-judgemental attitude.

5-9 What are the barriers to a good holistic assessment?

Common barriers are:

Barriers to a good assessment include a lack of time and of privacy.

5-10 What challenges may be encountered when assessing children?

Children respond very differently to adults when they are not well. Their developmental age and stage will impact on every aspect of their life be it physical, psychosocial or spiritual. Children can be uncooperative when ill and in unfamiliar environments. Therefore, physical examinations may be difficult and require patience and time. Children’s illnesses are often complex and children respond differently to pain and symptoms. Healthcare providers may feel ill-equipped to deal with complex problems due to inexperience or lack of training.

5-11 When should a holistic assessment be done and who should do it?

A holistic assessment is not a single, once-off event that takes place in one sitting, but rather an ongoing process that occurs throughout the period of care as the needs of the child change. An initial assessment may take place over multiple sessions as the various team members assess the physical, psychosocial and spiritual aspects of the child and the family. Different team members may do different parts of the assessment.

The assessment process

5-12 How should the process of assessment be approached?

Assessment is not about only collecting the information and data required but also about how we approach the assessment. The way you assess is also important and includes:

5-13 What are the steps required in the assessment process?

When assessing the child, it is important to first establish what is normal in the daily life of the child before assessing what is abnormal. The process of assessment is ongoing and includes numerous steps, assessment techniques and tools, sources of information, involvement of team members and continual re-assessment.

The steps are as follows:

Step 1: Gather the data and information required

This should be from:

Step 2: Process the information

A team meeting with all the appropriate team members needs to be facilitated where all the relevant information and data that has been gathered can be discussed. Remember that the child and family are part of the team and need to be involved in the discussions and planning of care.

Step 3: Come up with a plan of care

This should meet the needs of the child and family at that specific time.

Step 4: There will need to be ongoing re-assessment and review of the care plan

This is important, as the needs of the child will continue to change throughout the course of the illness or disease.

The assessment process requires that data is gathered and processed by various team members and an individual care plan developed for the child that is continually reviewed.

Figure 5-1: The holistic assessment approach used in children’s palliative care.

Figure 5-1: The holistic assessment approach used in children’s palliative care.

5-14 What are assessment tools?

Assessment tools are forms or questionnaires that are completed and are used to gather data for each patient. If possible, the parents and family should help complete the forms.

5-15 Which are the common assessment tools used in children’s palliative care?

There are various assessment tools that can be used for the physical, psychosocial and spiritual areas specifically. Examples of these include:

See other relevant chapters in this book for examples of these tools

Assessment tools can be used to gather data.

5-16 How should the information and data gathered from the holistic assessment be documented?

Organisations, facilities and institutions will all have their own assessment forms and clerking forms that are used. In children’s palliative care all the relevant information and data gathered by the various team members should be recorded in a single document. This should be made available to all the healthcare providers involved with caring for the child in order for them to get a holistic understanding and view of the individual child and family.

The information gathered should be recorded in a single document for all healthcare providers to view.

Care planning

5-17 What is care planning?

Once all the needs and concerns of the child and family have been identified into a problem list they can be prioritised and broken down into manageable solutions and a plan of care can be developed.

Care planning is the working together with the child, family and healthcare providers to develop realistic and achievable holistic plans of care that are child and family centered. Care planning starts soon after the diagnosis, and as the child’s needs and problems change and the illness or condition progresses, so the type of plan of care will change. Care planning takes into consideration the goals of care that have been established and at what level the interventions will be.

Care planning is the working together of all team members to develop agreed holistic plans of care that are patient and family centered.

5-18 What are goals of care?

Goals of care are the hopes and expected outcomes that the child and family would like to see happen or be achieved through the course of the illness or condition. They are based on the child and family’s values and preferences and include the physical, psychosocial and spiritual aspects and are not necessarily based on just end-of-life decisions.

Goals of care may include:

Having goals of care will assist in the planning of the care and the level at which interventions can be implemented. The next step is to draw up a care plan that prioritises the goals of care.

Goals of care are the hopes and expectations of the child and family.

Care plans

5-19 What is a care plan?

A care plan is a written document (tool) of the interventions and support that are to be provided to the child and the family. The plan gives a framework for care to be provided. The plans should be reviewed regularly in order to ensure that the child’s complex and changing needs continue to be addressed.

A care plan should be:

A care plan is a single written record that documents the plan of action and care that is to be provided.

5-20 Are there different types of care plans?

Yes. Different care plans are developed according to the stage and progression of the child’s illness or disease. The different types of care plans include:

Figure 5-2: Palliative care, advance care and terminal care plan.

Figure 5-2: Palliative care, advance care and terminal care plan.

The palliative care plan

5-21 Who develops the palliative care plan?

A care plan should be written in partnership with all healthcare providers who will be actively involved and responsible for the care of the child and the family. It could be the primary care team, the palliative care team or both. The plan will need to be communicated to all persons providing care and interventions in order for there to be good communication and a continuum of care.

5-22 When should the palliative care plan be written?

It is written soon after diagnosis once the holistic assessment, which identifies the child and family’s needs and concerns, has been completed. It needs to be reviewed and updated each time there is an assessment as the needs and concerns will be continually changing and all team members need to be advised of these.

5-23 What is the general format of a palliative care plan?

The palliative care plan is holistic and therefore will include all the area’s that were assessed and problems identified. The palliative care plan identifies:

A palliative care plan identifies the problems, the action planned and by whom, and the time frame for the action to take place or be reviewed.

Problem Action planned Team member Time frame

Figure 5-3. A format that can be used for a palliative care plan

See Appendix D for an example of a palliative care plan.

Both non-pharmacological and pharmacological management will need to be included in the action plan where appropriate.

Advance care planning

5-24 What is advance care planning?

In general, people plan for important life events. Some plan pregnancies, have birthing plans, plan weddings and make retirement plans. When it comes to making plans when facing serious illnesses and around death and dying, many shy away from this. This may be because people are scared of death. Losing a child is a devastating and heartbreaking experience and considered one of life’s major stressors. Planning for something that may be inevitable and will indeed be stressful or even scary is important as it can help families to be prepared, to have some control over things and to plan according to their value systems before a crisis arises.

Advance care planning (ACP) is ‘the process of discussing issues and planning ahead in anticipation of a change in condition in the future.’ The main goal of the process is to get to know the patient, their illness, what complications may arise, what the family’s values are and how that could guide decision making before a crisis arises.

Advance care planning is a process, and not just a document that addresses an expected future event.

An advance directive is a document by which a person (18 years and older) makes provision for healthcare decisions in the event that, in the future, he or she becomes unable to make those decisions. These are also known as ‘Living Wills’ or ‘Durable Power of Attorney for Health Care Documents’. These are not applicable to children.

5-25 What are the advantages of advance care planning?

There are several benefits to advance care planning both for healthcare workers and also for families.

Benefits to the healthcare workers include:

There are also benefits to the family:

Advance care planning helps both healthcare workers and families to have a better sense of control and know what to do and not to do in an emergency.

5-26 Are there any disadvantages or risks to advance care planning?

Advance care plans can’t always plan for every complication and sometimes events arise that are unrelated to the primary illness and may be difficult to manage within the outlined plan. Healthcare providers need to have experience and wisdom when it comes to unexpected events. Having a plan may at times distract healthcare providers from thinking outside the plan and may lead to under management of reversible unrelated events.

5-27 What are the key components of an advance care plan?

Key components of an advance care plan include:

Resuscitation status and intervention levels refer to whether the family (and child, if age appropriate) wish for the whole range of resuscitation and medical interventions should a life-threatening situation occur, for example, a cardiac arrest or a massive bleed, or whether they wish for comfort care only.

See appendix J for an example of an advance (end-of-life) care plan checklist.

5-28 Who should be involved in advance care planning?

The primary care team should lead the process. At least two healthcare professionals should be involved, especially when there are complex ethical issues where decisions need to be made to withdraw or withhold treatment. Where available, a specialist palliative care team can help guide the process. Other care teams or healthcare providers involved in the patient’s care (e.g. an oncologist, radiotherapist, neurosurgeons, nurses, social workers and allied healthcare workers) should be part of the discussions if needed.

The primary caregiver or legal guardian of the child must be part of the process and discussions, and both parents should be involved. Sometimes there may be other family members who play a key role in care or decision making. For example, where parents are young, grandparents can be invaluable in the planning process.

If a community-based organisation or home carers will be involved in instituting the plans, it is also useful, where possible, to include them as part of the team discussions.

Most importantly, the child has a right to participate in decision making around their care as appropriate.

5-29 When should advance care plans be drawn up?

The timing of the advance care plan process depends on the stage of illness and the rate of progression of the disease. Diseases that are known to progress faster will need more urgent planning, such as a non-curable cancer, whilst planning in diseases with slow progress such as cerebral palsy can be done with less urgency.

The timing may also be dependent on how the family likes to do things. Some may want to know and plan everything from the time of diagnosis while others may only want to do this ‘when the time comes’. It is important to balance postponing planning for too long with making plans too early especially if this causes anxiety and distress that is not warranted in the early stages of a long illness.

It is a useful idea to watch for opportunities that can serve as triggers to address the concept of forward planning. These opportunities may occur after unexpected life-threatening events or when it is becoming clear that the disease is getting worse despite treatments.

5-30 Where should advance care planning happen?

Ideally one should try to have these difficult discussions in a quiet and unrushed space while the child is still stable. Unfortunately, this is seldom the reality and sometimes these plans do need to be made in difficult settings such as intensive care units. It is important to be very careful not to have sensitive discussions around the child’s bed even if it is thought that that the child is not able to hear, for example, if the child is sedated or unresponsive.

Ideally, advance care planning should be done in a quiet, unrushed and private space.

5-31 How should advance care planning be done?

An ideal advance care planning process could be the following:

  1. Identify the need for an advance care plan.
  2. Collect all available information about the child’s illness including investigations and literature, where needed, on the expected trajectory of the illness and possible cure rates.
  3. Organise a team meeting, if needed, to discuss the illness and psychosocial considerations as well as possible scenarios with key role players. This is especially needed for children with complex illnesses that involve many systems or where prognosis is uncertain.
  4. Start drafting a plan so as to have an idea about what questions and issues need to be raised with the child’s caregivers or family.
  5. Have a meeting with the child’s caregivers or family as needed to find out their values, wishes and choices on place of care.
  6. Draw up the plan using information collected from meetings with professionals and discussions with family.
  7. Meet with the caregiver and child, where appropriate, to discuss the plan and make changes if necessary.
  8. Finalise the plan and get the caregiver or older child to sign the document.
  9. Make copies available to the relevant parties (family, hospital and outside organisations to be involved etc.).
  10. Revise or change the plan as and when needed (e.g. new complications or unexpected recovery).

5-32 Is an advance care plan for a child legally binding?

No, it is not. It is a guidance document and not a legal document like an advance directive or living will.

An advance care plan is not a legally binding document unlike a living will.

5-33 Can an advance care plan be changed?

Yes, it can and should change, especially if things change in either direction, for example, unexpected rapid deterioration or improvement.

Terminal care plans

5-34 What is a terminal care plan?

The terminal phase is considered to be the last 48 hours before a person dies. It is not always possible to predict the exact time but there are known signs and symptoms that will indicate that this phase has been reached. A terminal care plan will help guide the care and interventions to be provided in these last few hours and the immediate care and support once the child has died.

5-35 Is the terminal care plan a separate document from the advance care plan?

This plan is usually included in the advance care plan but can be drawn up as a separate plan, especially if the care to be provided is only end-of-life care. The terminal care plan can be attached or filed with the advance care plan if developed with the advance care plan. All healthcare providers should have access to this care plan.

See chapter 11 for further information on a terminal care plan checklist.

Case study

A 13-year-old boy named Peter, who has been diagnosed with leukaemia, is admitted to the general adult ward hospital for pain and symptom management. His symptoms include joint pain, breathlessness and tiredness. The boy is the oldest of three children and is very anxious and appears depressed. He thinks his illness is punishment from God because he does not like looking after his siblings when his mother is working. His mother is a single parent, who relies on a grant and part time employment to provide for her family. The family live in a rural area 50 km away from the hospital.

1. What type of assessment will the care team need to do and why?

He will need a holistic assessment. He has a life-threatening illness and therefore a palliative care approach to his management is required. This includes the total care of the child’s body, mind and spirit and involves giving support to the family.

2. What will be the aim of this holistic assessment?

The aim will include:

3. Who does the team need to gather information from?

Information needs to be gathered from the boy, his mother and any other previous care providers as far as possible.

4. What common barriers could affect a good assessment?

The boy’s mother works part time therefore may not have time to be available to gather information from. The boy is in an adult general ward so there may possibly be a lack of privacy and therefore he may feel reluctant to share information.

5. Which assessment tools may be used by the various team members in the assessment?

A variety of different assessment tools are available to use in the assessment of the boy’s physical, psychosocial and spiritual needs as well as the concerns and family support needed. These tools can include an age appropriate pain assessment tool, a spiritual tool, a family tree to assess the family details and a tool to assess the boy’s current general health and situation.

6. Where must all this information be documented?

This information should be gathered and documented on a single document that is shared with the care team.

7. What needs to happen with the information and data gathered from the assessment?

An individual plan of care needs to be developed for this boy and his family. This care plan must prioritise the needs and concerns identified in the holistic assessment.

8. How would you list his problems on the palliative care plan (use the following template to insert the problems)?

Problem Action planned Team member Time frame

Physical problems include: Pain, tiredness and shortness of breath.

Psychological problems include: Anxiety and depression.

Social problems include: Responsible for his younger siblings so possibly not going to school and isolation from peers.

Spiritual problems include: Fear of being punished by God.

Family problems include: Financial problems and possible transport problems for mother to get to hospital.

The boy goes home once his symptoms are under control and the social worker has assisted the family with the psychosocial issues the family has. He however is admitted six months later for end-of-life care.

9. What type of care plan would you develop for the boy now?

An advance care plan can be developed where potential end-of-life scenarios are identified and planned for, together with the boy, his family and the care team.

10. What key components would you think important to include in his advance care plan?

Key components are:

11. Who needs to have a copy of this advance care plan?

Everyone involved in the care of the boy including his mother needs to have a copy of the advance care plan.

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