Category: Advancing Modules

Could George be referred to specialist palliative care services?

Specialist palliative care services are organised and delivered in different ways in different hospital trusts. The level of input that can be provided by the stroke team themselves versus the need from a specialist team should be considered by the team looking after the patient. However, having an understanding of what specialist services may be able to provide can be useful to improve patient care.

At this stage, the stroke team felt that support required by George and his family were being adequately met and therefore, he did not need a referral to specialist palliative care services.

Dealing with differing opinions

The team have already identified differing opinions between George’s wife and daughter. His daughter wishes to progress with active treatment but his wife wishes to move towards end of life care.

The acronym ‘PREPARED’ can be used to ensure a consistent approach to dealing with difficult discussions/decisions.

Another helpful system is the REDMAP Framework. See additional information for more information on this and a short video introduction to this framework.

Reference: (adapted) Clayton M, Hancock K, Butow P, Tattersall P, Currow D, 2007 Clinical Practice Guidelines for Communicating Prognosis and End of Life Care Issues with adults in the advanced stages of life limiting illness and their caregivers. Journal of Australian Medical Association, Supplement, 186,12, 77

It is also very important to provide written/visual information to support conversations, understanding and shared decision making. This provides the patient/family with a record of the conversation which they can review and discuss as a family. An example of a shared decision making resource is Tailored Talks, which enables professionals to easily share personalised medical and health information with patients and their families. For more information on how Tailored Talks can support shared decision making in healthcare visit pogodigitalhealth.com

 

What George’s wishes are

It is important to emphasise to the family that the team are trying to find out what George’s wishes are. The team agree that George does not have capacity to participate in decision making. He has had an Adults with Incapacity Certificate completed for all his care since early in his admission. When considering a best interests decision for George the team ask themselves a number of questions:

  1. Can we intervene to ensure George is supported to be involved in decision making?

The team need to consider- George cannot communicate and doe not respond to visual cues, therefore determining the best ways to support his communication is essential. However George is not attending to visual stimuli or responding to basic commands in any consistent way.

  1. Is there an advance directive or advance care plan in place relevant to this situation?

The team need to consider- although an advance care plan is not legally binding, it could give insight into    George’s wishes prior to this severe stroke. George had not formally recorded his wishes prior to his stroke

  1. Does his family know of any strongly held views George has held about tube feeding?

The team need to consider- conversations with families can help to reveal any preferences held by George     without feeling they must make a decision themselves.

  1. What are the feasible options?

The Team need to consider- the relative benefits and burdens of the options need to be considered.

 

The Adults with Incapacity (Scotland) ACT 2000 Guide to assessing capacity [PDF, 163KB)] provides information on communication and assessing capacity for social work and health care staff.

 

The team prepare for the family meeting

During the MDT meeting, the team decide to arrange a family meeting; issues which are likely to be raised at this meeting are:

  • What George’s wishes are
  • George’s nutrition/hydration status
  • Dealing with differing opinions
  • Should George be referred to specialist palliative care services?
  • Next: Outcome of family meeting

Navigate through the next pages to learn about each of these items.

Team meeting

George’s condition has not improved, he has ongoing complications such as a chest infection and the team feel his prognosis is poor. It is also clear from the discussions that there are differing opinions on George’s potential recovery in the family.

Key messages

  • Accurate predication of outcome is difficult following acute stroke due to the uncertain trajectory of stroke illness.
  • Families sometimes wish to be involved in end of life decisions but need to understand the difficulty of making accurate prognosis. Honest and early communication from the stroke team will help families at this difficult time.
  • There are formal procedures to deal with issues such as Do not attempt CPR and advance care planning and the guidance should be followed carefully.
  • Stroke presents specific challenges in dealing with symptom management in end of life care.
  • Spiritual and religious preferences should be addressed.
  • Many individuals may have made a decision around organ or tissue donation. These should be explored as part of advance care planning

Patient/carer information

Information leaflets:

Websites:

Staff resources

Useful documents

Useful websites

Care pathways/local guidance/local contacts

There may be variations in Palliative care guidelines between countries and regions. The resources we have provided are by no means exhaustive- please familiarise yourself with relevant local guidelines.

Useful links to resources that can be provided to patients and families

  • Good Life, Good Death, Good Grief   website providing information and support that can help through the difficult times that can come with death, dying, loss and care.
  • Good Life, Good Death Good Grief, Support with covid-19  this site also provides important additional resources for people in Scotland who may be worried that they, or someone they care about, is at increased risk of getting seriously ill and potentially dying from COVID-19.
  • Dying Matters is a coalition of individual and organisational members across England and Wales, which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life.
  • NHS Inform provides information on palliative care, support & rights.

Learning opportunities

 Key contacts:

  • Local palliative care trainer

 Useful websites:

Competencies, learning & development- not stroke specific but give useful general information:

The paramedics have to make a decision quickly

Thrombolysis can be carried out at most hospitals (spoke) with an Emergency Department but thrombectomy can only be carried out at a specialist hospital (hub).

The paramedics will, except under very special circumstances, take the patient to the nearest hospital to receive early thrombolysis, but where a so call “by pass protocol” has been agreed they could decide to travel further to a thrombectomy hub. This will delay thrombolysis but potentially allow thrombectomy to be done earlier. The paramedics will, perhaps with advice from a stroke specialist, make a decision and pre-alert the receiving hospital.

The paramedics could:

Take the patient to the nearest hospital which can carry out an emergency CT scan, and provide thrombolysis if appropriate. That hospital will decide, based on a more detailed scan of the brain arteries (CT angiography or CTA), whether to refer to a Thrombectomy hub. This pathway is sometimes known as Drip (i.e. thrombolyse) and Ship (transfer to thrombectomy centre).

OR

By-pass the spoke and take the patient directly, but further to the thrombectomy hub. This will potentially delay thrombolysis (making it less effective because time is brain), but reduce the delay to a potential thrombectomy making that more effective. This pathway is sometimes referred to as “Mothership”.

Select the crosses below to see the advantages and disadvantages of the ‘Drip and Ship” and “Mothership” pathways.

In Jimmy’s case

The paramedics decided, after discussion with a stroke consultant on a “prof to prof” call (in line with the agreed by-pass protocol) that since the patient seemed to have a definite stroke with quite severe symptoms that the patient might be suitable for thrombectomy, and that they would by-pass the local spoke, and drive an additional 30 minutes to the thrombectomy hub. See Additional Information for more details.