The World Health Organization1 defines palliative care as: “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
- Provides relief from pain and other distressing symptoms
- Affirms life and regards dying as a normal process
- Intends neither to hasten or postpone death
- Integrates the psychological and spiritual aspects of patient care
- Offers a support system to help patients live as actively as possible until death
- Offers a support system to help the family cope during the patients illness and in their own bereavement
- Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
- Will enhance quality of life, and may also positively influence the course of illness
- Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Palliative care can be provided to patients in different settings, for example at patients’ own homes, care homes, hospices, hospitals, and day hospitals. A crucial component of palliative care is the multidisciplinary input in managing the symptoms associated with the terminal or other life-limiting illnesses. The multidisciplinary teams in palliative care usually consist of doctors, nurses, physiotherapists, occupational therapists, pharmacists, chaplains, social workers, and volunteers etc. The whole emphasis in palliative care is on relieving and minimising the physical, psychosocial and spiritual suffering of patients and their care givers. These core aspects have been highlighted and discussed in further detail below.
Patients with terminal and other life-limiting illnesses suffer from a wide range of physical problems, for example pain, poor nutrition, weight loss, dehydration, infections, incontinence, shortness of breath, nausea, vomiting, and tissue viability issues etc. It is important to manage these symptoms in a multidisciplinary set up, with good communication with the patients and their caregivers.
According to Gabel2 multidisciplinary team work has been shown to improve patient satisfaction. Tomko and Maxwell3 highlighted that discussions on goals of care should include clear information about treatment. They advised that most patients want to prepare for death, but it can be interfered by unwanted symptoms arising in the end of life. They also highlighted the physical symptoms and signs suggestive of approaching death, and the importance of communicating them with families.
In our experience, communications with families on approaching death helps them to come to terms with the situation, and spend the precious last few moments with the dying person. It can also help the families with any unfinished tasks like financial matters, and planning the funeral etc.
Levin4 highlighted the importance of end of life communication in intensive care units. Physicians often feel inadequately trained to discuss prognosis and death.5 Hence, often a referral to a hospice is delayed. Unclear goals of care can lead to unwanted or ineffective treatments with inappropriate length of stay.6 Therefore, the goals of care should be clearly defined.
The General Medical Council (GMC)7 in 2010 published a useful guidance on end of life care. It is important to treat distressing physical and psychological symptoms, but serious consideration should be given to when to withdraw treatment, artificial hydration and nutrition. Again, the guidance from the GMC on end of life care and recommendations from Dunlop8 regarding no clear benefits and potential harms of artificial nutrition and hydration is useful in this context.
Slomka9 also highlighted the clinical and ethical aspects of withholding nutrition at the end of life. A specialist opinion should be sought when in doubt. The family members and caregivers should be kept informed and involved throughout regarding complex decision making on providing and stopping artificial nutrition and hydration.
Regarding barriers to hospice referrals, physicians having difficulty predicting prognosis, and not having much knowledge of eligibility criteria plays a vital role in it.10 As suggested by NICE,11 palliative care teams have a vital role in end of life care. Their early involvement is crucial for the holistic management of the terminally ill patients. If the patients keep deteriorating despite all the applicable and appropriate medical treatment, then the Liverpool Care Pathway can be considered and initiated as a multidisciplinary input document.
The Liverpool Care Pathway had been recommended by the Department of Health.12 The whole emphasis of this multidisciplinary pathway is on keeping the patient as symptom-free as possible, without unnecessary tests and treatments, with a view to providing excellent end of life care. However, lately the government had plans to phase out the Liverpool Care Pathway due to some staff wrongly interpreting its guidance, and the pathway being wrongly implemented.
An independent report by the Department of Health13 on the review of the Liverpool Care Pathway recommended that it be replaced by an end of life care plan specific to an individual patient’s condition, and it should be backed up by good practice guidance that is specific to that condition only. Sometimes, a “do not attempt resuscitation (DNAR)” form is considered for the patients who are terminally ill. It is a medical decision to sign this form, however the views of the patients and/or their families should be sought early, which helps with establishing the patients’ wishes for or against resuscitation.
Further guidance on not attempting resuscitation can be found from the joint statement of the Royal College of Nursing, British Medical Association, and the Resuscitation Council, UK.14 Signing a DNAR form for a patient does not mean that nothing can be done for the patient. The patient can still be given full supportive medical and palliative care as per the symptoms. The patient should be given full autonomy to make an informed decision about the treatment or the services being offered to them.
Woods16 highlighted the meaning and relevance of autonomy in healthcare, and how it can be applied in the context of palliative care. An important subject to discuss with the patients in palliative care is advance care planning, and advance directives. It involves patients expressing their wishes for, or against specific treatments in the end phase of their lives. The end of life care strategy by the Department of Health16 advocates the use of advance care planning.
Kessel and Meran17 highlighted the practical considerations for doctors on advance directives in the UK. The patients should be assumed to have intact mental capacity to make informed decisions, unless proven otherwise.
The guidance on the Mental Capacity Act 2005 can be found from The National Archives.18 An important aspect of palliative care is symptom management. A number of medical and surgical interventions can be performed as a palliative treatment eg. draining the distressing pleural effusion, ascites, abscesses, and treating infections etc. Various symptoms can be managed with medication also, however a specialist opinion should be sought early especially for guidance on the type, dose and frequency of the medications.
Psychosocial and spiritual aspects
Patients at the end of life can suffer from depression, anxiety, guilt, stress, worthlessness, paranoia, fear, and even suicidal thoughts and attempts. It is important to address these issues, and offer help as soon as a problem is found. In our experience, sometimes due to the fear of upsetting people a number of patients do not wish the healthcare staff to communicate their illness with their families. It should be established with the patients how much information can be delivered to the family and friends. They may wish to keep their condition confidential, and this should be strictly respected and practiced. Further guidance on confidentiality is available from the GMC.
It is not just the patients, but also their caregivers and the healthcare professionals who suffer from psychological and emotional distress in palliative care. This is very well highlighted by Lobb.20 Their article illustrated the risk factors for psychosocial distress, different forms of grief, losses in life-limiting illness, and stress faced by the health professionals caring for the dying and their families. They highlighted useful communication strategies, which can be adopted by the healthcare professionals to respond to the distress faced by the patients and their families. Kelly21 highlighted the importance of psychological and psychiatric research methods and tools to detect psychological distress and identify individuals who would benefit from therapeutic interventions. It is vital to have good communication skills and respond to strategies to support the patients and their caregivers. Rajashree22 highlighted the need for training in communication skills for healthcare professionals as a part of the academic curriculum.
Patients and their caregivers feel satisfied when their expectations and concerns are addressed and managed by the multidisciplinary teams. Pituskin23 studied the effect of multidisciplinary team input in a palliative radiotherapy clinic. They reported improvement in symptoms and overall wellbeing of the patients at four weeks.
Isikhan24 studied the job stress score and coping strategies adopted by healthcare professionals working with cancer patients in Turkey. They concluded that findings of the study could be used to prepare coping strategy programmes for healthcare professionals working with cancer patients. It is vital to involve mental health specialists early in the course of action. Ramsay25 concluded that assessment by a psychiatrist in a palliative care unit was associated with an improved mental state. Vanderwerker26 studied the magnitude of psychological distress in caregivers of advanced cancer patients and concluded that discussions about it with them influences the receipt of mental health services in a positive manner.
Spirituality, spiritualism, and spiritual assessments form an integral part of palliative care. Chaturvedi27 highlighted different beliefs and concepts in the field of spirituality, methods of spiritual assessment, and provision of spiritual care at the end of life. This author concluded that the professionals have little training in this field and that training on spiritual aspects be introduced in palliative care education programmes.
Puchalski28 recommended that all healthcare professionals be trained in spiritual assessment. Balboni29 suggested that spiritual support is associated with better quality of life and Weaver and Flannelly30 concluded that religious and spiritual practices can help the cancer patients and their caregivers cope better in terms of distress associated with cancer.
Jacobson and Cain31 advised that physicians should practice open communication with patients considering alternative therapies and ask them to feel free to come back for standard conventional treatment anytime. In view of the evidence available, patients should be offered early specialist services by the mental health specialists and chaplains from different faiths depending on the patient’s faith.
Communication on death, dying and preferred place of death
An essential component in palliative care multidisciplinary meetings is to establish a preferred place of death, which in both my opinion and experience is very well done in the hospices and not in the acute hospitals. Patients should be asked for their preferred place of death, be it their own home, a hospice or even a hospital where they might be during their last few days or hours of life.
Ideally this should be established with the patient early in the course of their terminal or life-limiting illness. Beccaro32 in their survey on actual and preferred place of death of cancer patients in Italy, found that home was the preferred place of death for 93.5% of the patients. A document by Gomes33 explaining the local preferences and place of death within England is available for further reference. Burgess34 concluded that Australian GPs found it challenging to talk about death and dying, and that most patients expected the doctor to initiate the discussions. In my experience, this is a very similar situation in the UK.
Janssen35 in their study on Dutch and the US patients with chronic obstructive pulmonary disease concluded that the quality of communication in terms of end of life care discussion needed to improve in both countries. Travaline36 gave guidance in terms of improving physician—patient communication. Wallace37 also highlighted the importance of effective communication in palliative care. Arnold38 concluded that there are differences in the preferred places of death as expressed by patients. They highlighted that the majority of the patients (80%) who had never been admitted to a hospice wanted to die at home. However, the vast majority (79%) of those who had at least one admission in a hospice wanted to die in a hospice.
In my own observation and experience from multidisciplinary meetings in a hospice, majority of the patients wanted to die at home. If the patients are not able to express their preferred place of death due to lack of mental capacity, for example patients with dementia and delirium, then it is important to establish the preferences expressed by the patients with their families and caregivers. Again, advance directives and advance care plans play a crucial role in this context.
The essential component of palliative care is the multidisciplinary holistic management of terminal and other life-limiting illnesses to minimise and relieve the sufferings associated with them.
Early involvement of the multidisciplinary teams plays a vital role in overall patient satisfaction, and the overall wellbeing of the patients. Also a preferred place of death should be established early with patients.
Patients should be given full autonomy to make informed decisions and their confidentiality be strictly practiced. Often healthcare professionals find it difficult to talk about death, dying and have difficulties with predicting prognosis. They also have little experience in spiritual care and spiritual assessments, hence they need more training in these aspects.
Early involvement of a psychiatrist, and the provision of spiritual support is associated with improved mental health and a better quality of life. While managing the distress faced by the patients and their caregivers, it is important for healthcare professionals to develop coping strategies to deal with the challenging situations faced.
The families and caregivers of patients should be kept informed and involved throughout, and their opinions and views taken into account. However it is important to establish with patients how much information can be delivered to them prior to any discussions held.
It is important to treat distressing symptoms at the end of life. However, it is equally important to establish when to consider stopping active treatment, for example withdrawing artificial nutrition and hydration etc. A specialist opinion should be sought early when there is a doubt, and guidance from the relevant professional organisations be sought and followed.
Conflict of interest: none declared