How primary care coordinates end of life (EOL) care

Rodger Charlton

HK Pract 2024;46:114-116

A Primary Care Physician (General Practitioner/ Family Physician) can co-ordinate EOL care and what can be referred to as ‘primary palliative care’¹ and so palliative care in the community. This editorial describes and emphasises how this is the role of family physicians and is a personal reflection based on my experiences in the United Kingdom (UK) where there is no specific evidence base.

Let us consider those patients of ours who are going to die with a life-threatening progressive incurable disease which is far advanced with a limited prognosis and the focus of care is quality of life. And where the advent of death is certain and not far off and likely within 12 months. First, a philosophy of care is needed which includes good communication and the science of symptom control to facilitate a patient “to live until they die” as Dame Cicely Saunders the founder of modern hospice movement advocated² for both cancer and non-cancer patients.

Consider possible examples of conditions such as carcinoma of the pancreas, cancer with metastatic spread which is not responding to treatment, myeloma which has not responded to treatment and end stage pulmonary fibrosis. You will know of other conditions which will relate to patients you have cared for or you are currently caring for. In relation to this philosophy of care in 1976 Dame Cicely Saunders wrote; “You matter because you are you and you matter to the last moment of your life. We will do all we can to help you, not only to die peacefully but to live until you die.”³

There are differences between palliative care in the UK and Hong Kong. The similarity which you may not realise, is that as family physicians we provide the majority of the care in the last 12 months of life, although we are infrequently involved in the last days and last 24 hours. More than 90% of the terminally ill patient's last year of life and so care is at home under the care of their own doctor.⁴ The prevalence of dying at home in Hong Kong is extremely low.⁵ In the UK in 2023, hospital is the most common place of death (43.4%), deaths at home (28.7%), in a care home (20.5%), a hospice (4.7%) or in other places (2.6%).⁶ In Hong Kong, in 2014, 90% of deaths happened in a Hospital Authority with the remaining 10% estimated as dying in hospices and care homes.⁷

During the last 24 hours of life, family physicians may not be there at the end as there are considerable logistical and legal issues in Hong Kong to achieve dying at home. Similarly achieving this in the UK is becoming increasingly difficult, particularly with having a ReSPECT form in place.⁸ (A ReSPECT form is a Recommended Summary Plan for Emergency Care and Treatment.) Also the logistical issues, which are mainly a huge lack of resources out of hours, including staff and a lack of continuity of care, and the access to limited numbers of GPs in the UK is becoming increasingly difficult. In relation to the paperwork, from 9^th September 2024 all deaths in any health setting in the UK that are not investigated by a coroner will be reviewed by NHS medical examiners first.⁹

Nevertheless it is possible for family physicians to provide and coordinate the majority of the EOL care in the last 12 months of life. These are reflections from the UK with application to the different healthcare system of any country with good primary care, including Hong Kong. The key point is that over 90% of the terminally ill patient’s last year of life is at home.⁴ There should be a ‘Key Doctor’ in EOL care and this will be the family physician. That doctor is involved from the time of diagnosis of a life-threatening disease, through to almost the person’s death and beyond into bereavement. There should be an EOL care protocol in a primary care organisation where the key doctor is named and a named reserve / deputy key doctor should the key doctor not be available for a patient. This is a role for the family physician.

As a Key Doctor for such a patient, e.g., one newly diagnosed with carcinoma of the pancreas they should keep a register of such patients which will be a small number of patients and with this register, ensure that these patients are followed up. There should be a system in place to let colleagues know you are the ‘key worker’ doctor and who the deputy is when you are not available. The primary care team should be aware and it should be recorded in the patient record where it is flagged up when that record is opened electronically. Similarly, the patient should know and agree. Through this good organisation and coordination of care, there should be a positive and determined approach to form a good rapport and working doctor-patient relationship with such a patient. The key doctor should keep checking their records for specialist correspondence of consultations and ensure continuity of care through careful and organised follow up and accompanying the patient on this EOL care journey. It is important that the patient can easily access you as the key doctor or your named deputy when they need to make contact.

No specialist skills are required rather devoting a little extra time to these patients and being interested in the patient. There should be enthusiasm for this challenge to provide excellent care and it goes without saying to have a compassionate approach. A family physician may ask; ‘What’s in it for me?’. It is satisfying and rewarding work for which patients and their families will be very grateful at time that will be creating considerable anxiety for them.

A key outcome is ensuring anticipatory care and intervening on crises which can lead to avoidable hospital admissions and problems that can be managed in primary care by the ‘Key worker’ doctor. This doctor will know the patient best and for the patient who has a trusting relationship with this doctor, they can provide reassurance and be their advocate in the healthcare system.

This approach for the patient will make a big difference for them and ensure optimising quality of life until they die. It will enable the patient to have a ‘Good Death’.¹⁰ Remember what family physicians do well. This includes provision of whole person holistic care and recognising the need for the care of the patient as a ‘person’ and not just their disease. Similarly, their understanding that EOL Care is much more than the science of symptom control and as Dame Cicely Saunders described ‘total pain’ on many occasions where care to address that ‘total pain’ involves the physical, psychological, emotional, social and spiritual care¹¹ where the key is communication not science.

Family physicians are good a t recognising spiritual distress, where an aspect of a patient’s ‘total pain’ has not been adequately addressed should be identified. Similarly, this distress or ‘spiritual pain’¹² can be reduced by ensuring the key doctor keeps the patient well informed, helping facilitate resolution of any relationship conflicts, eg, in the family, enabling a patient to go through the process of letting go and having the opportunity of saying ‘good bye’¹³ to loved ones and their carers.

Ideally, this is a role where family physicians excel and this is working with the patient and their family by strengthening connections with the patient’s family including their carers and friends. Similarly, coordinating specialist care through hospital and doctors and other members of the multi-disciplinary team and a hospice with specialist palliative medicine if indicated. The role of the Key Doctor can be seen as a coordinator of patient care and an advocate for the patient.

Nearly every EOL care patient has an informal carer who plays a vital role and is often their spouse or partner. Often they are unintentionally neglected by the professional carers and a lot of support and input is required to ensure that they are coping and stay well. In the community coordination of care will also involve ongoing conversations as to the patient’s wishes and preferences for EOL care. Planning of advanced directives in case of an expected death should be carefully agreed, documented and updated with the patient and their family. In the UK this is done through the ReSPECT form described earlier.⁸

Advanced directives will be very difficult to address together with the issues raised to complete such ReSPECT paperwork in a short consultation. It is one of those consultations that is best prepared for and extra time set aside whether that be in the surgery or sometimes better still done in the context of a home visit. It is very much one of a series of consultations and one would want to follow the patient up and leave the door open for them to ask any more questions by posing the question at each future consultation; “Is there anything more that you want to ask?” Coming to a consensus is probably helping the person work through the five stages of anticipatory grief as defined by Elizabeth Kubler Ross¹⁴ bearing in mind that each patient is individual and does not necessarily go through or five stages or in any particular of Anger, Denial, Bargaining, Depression and Acceptance. Also, I believe that there is a sixth stage which could be defined as Resignation. In other words, resigned to what is going to happen to them rather than the stage of Acceptance, and so the need for and offering an going dialogue of consultations in the hope and anticipation that a stage of Acceptance can be reached.

In relation to coordination of care, there should be availability of clear handover information when the family physician/key doctor is not available as crises may happen outside of planned appointments. This can be through good access to well-kept patient records, shared records and patients who have a hand-held electronic record or paper record. In the UK, there is an National Health Service (NHS) App on a Smart Phone which can fulfil this requirement.

It is important to dispel the notion that “There is nothing more that can be done for you”.¹⁵ As this paper details, there is so much the family physician can do. Additionally, in the UK, the family physician can also be involved in symptom control at the last days of life for some patients through anticipatory care medication which may be delivered through a syringe driver enabling dying and death in the patient’s home. Whilst in specialist care, where feasible, contact should be maintained during hospital/ hospice care. Also palliative care does not end with the patient’s death but provision of organised contact with the family after death as part of bereavement care for at least 12 months.

Training is important. Training of undergraduates as future doctors for care of EOL patients in hospital and for family physicians in the community should be provided in palliative care with its key components of communication and the science of symptom control. With an EOL Care patient, the family physician can spend time with the patient through their palliative care trajectory communicating and prescribing. Training should remind the family physicians of the skills they already have and give them the confidence to provide and coordinate patients’ care at EOL.

In conclusion, family physicians in the last 12 months of life are involved in 90% of the EOL patient’s care. It is important to follow up such patients and so define the ‘key worker’ doctor and a deputy for when the key doctor family physician is not available. This should be part of a protocol of care that ensures good organisation and coordination of a patient’s EOL care. No Specialist skills are required and good outcomes can be achieved through provision of continuity of care and so anticipatory care. The Key Doctor can be seen as the coordinator of patient care. It is important to keep in touch with the medical records and all practitioners having access to and sharing of the patient record when the key doctor is not available, eg Out of Hours, as this is often when crises occur. With this information hospital admission can be averted to a better environment for ongoing EOL. It is helpful to plan advanced directives with the patient enabling the patient to have a ‘Good Death’.¹⁰ When a patient dies, bereavement care is importance and can be a role of the family physician.

References

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