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Palliative care is traditionally associated with care of persons with advanced cancer and those who are terminally ill. Gradually, the philosophy of palliation has been extended to other incurable diseases, such as neurological disorders, pulmonary and cardiac diseases, kidney and other organ failures. Lately, palliative care for chronic and incurable neurological diseases has become popular, especially for dementias and other chronic and progressive degenerative diseases. In context of these positive developments, it is heartening to see a qualitative study on palliative needs of stroke patients in this issue of the journal. As mentioned in this article, stroke is one of the important noncommunicable diseases leading to great morbidity and mortality. Most stroke patients suffer due to multiple symptoms and disability. Clinical neurologists focus either on prevention of future stroke or on planning rehabilitative physiotherapy and other interventions to reduce disability. Although stroke patients also report of different types of pain symptoms, one does not pay much attention to these.
The study by Lloyd et al. has identified eight palliation-related themes in their qualitative study. Physical burden in the form of pain due to different factors is an important one. Psychological needs are also significant. Poststroke depression is commonly seen in clinical practice but does not get its due attention as this is considered as a natural reaction to the functional disability due to stroke. This reminds us of a similar situation of depression in advanced cancer which is considered to be a natural reaction to disease. Like in palliative care for cancer, communication skills are of paramount importance. Patients and their caregivers have similar questions about-why me?, what will happen in future?, and risk of further vascular attacks. In stroke patients, communication with the patient becomes a bigger challenge due to aphasia and inability to consent due to lack of capacity.
Stroke patients also have social and psychological issues similar to those in patients with advanced cancer. Spiritual distrust and distress is also reported in this study in the form of existential distress and spiritual struggle. This emphasizes the role of psychosocial and spiritual care for stroke patients.
Two other important dimensions of palliative care in stroke patients need a mention. First is end-of-life care; like in palliative care for advanced cancer, end-of-life issues are important in stroke. Stroke is more unpredictable and sudden as compared to advanced cancer. This makes the end-of-life care even more challenging. Patients and family members are likely to raise questions about these end-of-life care issues frequently. The second dimension is on quality of life. Like improving quality of life is a major goal for palliative care in cancer, the same applies for stroke. There are standardized scales for assessment of quality of life in stroke patients. All efforts need to be made to improve the quality of life of stroke patients.
Other related issues are addressing caregiver burden faced by relatives or caregivers of the stroke patient. This might include individual or group counseling and psychosocial support. The chronicity of disability due to stroke can lead to stress and burnout among the caregivers. Shared decision-making and individualized care is advisable. Staff must be supported and trained in talking openly and honestly about the possibility of death or survival with severe disability, particularly in the acute setting, where the majority of deaths occur.
Some professionals may view the term “palliative care” as something negative, applicable only to someone who was clearly dying, as a recent study noted. Barriers to its use included prognostic uncertainty, although one physician understood that this may remain, even after introducing a palliative approach. Professionals spoke about the need for everyone involved in patient care to have the time and ability to communicate effectively, with referrals being made to specialist palliative care only when required.
In our country, where palliative care is only 25 years old, spreading its role to other life-threatening diseases may take time. However, there is no doubt that palliative care for stroke patients is also equally important. Two approaches can be suggested. First, if there is a palliative care unit or center, stroke patients can be referred for palliative care services. The second approach may be that the doctors and nurses in the stroke unit themselves get trained and skilled in providing palliative care services to their stroke patients. More research in this area will also throw light on the approaches which can be applied in stroke patients in our country. Palliative care could provide additional support to improve outcomes of stroke patients and their families.
- Indian J Palliat Care. 2019;25:84-91.A qualitative study on palliative needs of stroke patients in an Indian tertiary care setting - doctors’ perspective.
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- CMAJ. 2018;190:E238-46.Outcomes, experiences and palliative care in major stroke: A multicentre, mixed-method, longitudinal study.
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