The ﬁnal part of our special report on cancer and the role of the GP considers issues and challenges around end of life care and palliative care emergencies.
Dr Pauline Love, Dr Steven Beaven, Dr Jackie Dominey, Dr Catherine Burton GP Advisors Macmillan Cancer Support. Produced in collaboration with Macmillan Cancer Support
In the previous article we discussed the importance of primary care teams in the delivery of high quality end of life care. This time we will discuss current guidance regarding end of life care and consider some palliative care emergencies that may present to primary care.
We have linked palliative emergencies within this article as, although uncommon, health care professionals should be mindful of such emergencies when caring for patients with cancer. Recognition in primary care and instituting appropriate management, depending on the patient’s wishes, may greatly benefit the patient.
After the Liverpool Care Pathway (LCP)
The LCP was developed during the 1990s, based on the care of the dying within the hospice setting, and with the aim of transferring best practice to other settings. The LCP provided guidance on aspects of care including comfort measures; anticipatory prescribing of medicines; discontinuation of interventions that were no longer necessary or in the patient’s best interests; psychological and spiritual care; and care of the family (both before and after the patient’s death).
Following concerns, particularly those expressed by families during 2012, the Minister for Care and Support commissioned an independent review of the LCP under the chairmanship of Baroness Julia Neuberger. The Review received submissions from members of the public, health and care professionals, professional bodies and other organisations.
The review’s report, More Care, Less Pathway,1 acknowledged the strengths of the LCP, but also described its widespread shortcomings when used inappropriately and recommended its withdrawal.
In response to this document, the Leadership Alliance for the Care of the Dying Person (LACDP), representing 21 national bodies, was established. Their report, One Chance to Get it Right,2 set out five priorities of care.
The ﬁve priorities of care for the dying person
Caring for people who are close to death demands compassion, kindness and skilled application of knowledge. The five priorities for care towards the end of life are of fundamental importance not only for patients but also for those close to them.
The five priorities are:
- The likelihood of impending death is recognised and communicated clearly, decisions are made and actions taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly.
- Sensitive communication takes place between staff and the dying person, and those identified as important to them.
- The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.
- The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.
- An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion. Ideally, it should be a written plan, a copy of which is given to the patient.
The duties and responsibilities of health and care staff to ensure the priorities are achieved are emphasised in the document. The priorities are of equal importance and each supports the primary principle that individual care must be provided according to the needs and wishes of the person.
These priorities are similar to the ethos behind the development of the Liverpool Care Pathway. Primary care teams need to understand these Priorities and reflect on how to implement them in their practice settings.
Palliative care emergencies
Here we will consider the more common emergencies that may occur with advanced disease and where patients may present in primary care.
Malignant spinal cord compression
The incidence of MSCC is unknown because cases are not systematically recorded. Studies from Scotland3 and Canada,4 suggest that the incidence may be up to 80 cases per million people every year, equating to approximately 4,000 cases in England and Wales
The Scottish audit showed significant delays from the onset of symptoms suggestive of MSCC to recognition and referral by general practitioners and hospital doctors. The median times from the onset of back pain and nerve root pain to referral were three months and nine weeks, respectively. Nearly half of patients with MSCC were unable to walk at the time of diagnosis and of these, the majority (67%) had recovered no function after one month. Of those who could walk unaided at the time of diagnosis, 81% were able to walk (either alone or with aid) at one month. The ability to walk at diagnosis was also significantly related to overall survival.
These findings underline the importance of early recognition and treatment of MSCC, in order to preserve function. Not only is preservation of mobility important, but preservation of continence makes a huge difference in maintaining dignity at the end of life.
Early detection of MSCC – how can we improve this?
- Inform patients with or at high risk of bone metastases, their families and carers about symptoms suggestive of MSCC and what to do if they develop. Consider using leaflets.
- Contact the MSCC co-ordinator/oncologist urgently (within 24 hours) to discuss the care of patients with cancer and any of the following symptoms suggestive of spinal metastases:
- pain in the thoracic or cervical spine
- progressive or severe unremitting lumbar spinal pain
- spinal pain aggravated by straining (for example, at stool, or when coughing or sneezing)
- localised spinal tenderness
- nocturnal spinal pain preventing sleep.
- Contact the MSCC co-ordinator/oncologist/hospice or spinal surgeon in your area that specifically treat MSCC immediately to discuss the care of patients with cancer and symptoms suggestive of spinal metastases who have any of the following neurological symptoms or signs suggestive of MSCC, and view them as an oncological emergency:
- neurological symptoms including radicular pain, limb weakness, difficulty in walking, sensory loss or bladder or bowel dysfunction
- neurological signs of spinal cord or cauda equina compression.
Possible symptoms of hypercalcaemia – be mindful that all may not be present:
- Alterations of mental status such as lethargy, depression and confusion
- Abdominal or flank pain (the workup of patients with a new kidney stone occasionally reveals an elevated calcium level)
- Weakness and vague muscle/joint aches
- Polyuria, polydipsia, nocturia
- Coma with severe hypercalcaemia.
Superior vena cava obstruction
Possible clinical features of SVCO
- Breathlessness because of swelling around the trachea
- Headaches, which worsen on leaning forward or bending
- Facial swelling with a plethoric complexion
- Visual disturbances
- Swollen neck, arms and hands
- Distended veins on the chest wall
2. One Chance to Get It Right https://www.gov.uk/government/ uploads/system/uploads/attachment_data/file/323188/ One_chance_to_get_it_right.pdf [Last accessed October 2014]
3. Levack P et al (2001) A prospective audit of the diagnosis, management and outcome of malignant cord compression (CRAG 97/08). Edinburgh: CRAG.
4. Loblaw DA, Laperriere NJ, Mackillop WJ (2003). Clinical Oncology 15 (4): 211–17.
5. Stewart AF. N Engl J Med 2005; 352:373.