Neha Sinha, CEO & Co-founder, Epoch Elder Care talks about the role of palliative care for elders
‘How people die remains in the memory of those who live on’ – Dame Cicely Saunders
Death is inevitable; as living beings, dying is a normal part of our life cycle. Most people at some point of their lives would have thought about ‘how they want to pass away’. It is always a pleasant picture that we imagine with no pain, comfort, surrounded by loved ones and a life with no regrets.
Palliative care (also known as end of life care) is an important, integrated part of person-centered healthcare. This field of study deals with ‘normalising death’ as much as possible, helps persons and their families deal with the end moment and its consequences.
End of life care starts when elderly (or anyone) reaches a critical stage of his/her life that may lead to death, either due to the progression in the medical condition or due to a chronic condition. Palliative care focuses on the person as well as the family. The key is to improve the remaining quality of life even if it is for a few days or weeks, by focusing on relief from the pain, symptoms, also physical and mental stress. The care plan stops being curative (reduced interventions, antibiotics etc.) and moves towards pure management. WHO says that, relieving serious health-related suffering of an individual, be it physical, psychological, social, or spiritual, is a global ethical responsibility. It states that globally, it is estimated that only fourteen percent of patients who need palliative care receive it.
A palliative care plan is normally philosophy based. Good palliative care is about understanding what ‘Quality of death’ is. The Institute of Medicine defines a good death as ‘one that is free from avoidable distress and suffering for patients, families and caregivers in general accord with the patients’ and families’ wishes, and reasonably consistent with clinical, cultural, and ethical standards’. The person feels he/she is in safe hands as death comes closer. For families, a ‘good death’ for their loved elderly means that the elderly is comfortable, well groomed, relieved from pain (as far as possible) and other symptoms, and treated with respect, dignity and compassion in their last moments. It is also preferable that the person is in a familiar place surrounded by family and loved ones.
Apart from pain and symptoms management, good skin care, regularly maintaining oral hygiene and nutrition management are important, and many-a-times, they may get deprioritised. For e.g.: In nutritional care, the idea is to minimise food-related discomfort and try to maximise food enjoyment, by giving him/her food items as per his/her preferences.
A main step in palliative care is to involve the family and near and dear ones. It is imperative to be an empathetic and compassionate caregiver when one is part of a palliative care plan. Families and loved ones at this point are heavily relying on professionals for support, comfort and most importantly hope. It is equally important to not mislead or misguide them into false hope- communication must be done responsibly.
The caregivers or doctors need to update the family with developments in the medical condition of their loved one, provide emotional support, help them prepare for the inevitable.
They need to counsel families, help them with the prognosis, understand treatment goals if any and options, what they should expect next and how they can best deal with it. A holistic communication between the medical team and the family members also helps facilitate discussions in finding meaning in this dying process, and achieving a sense of control while trying to confront and preparing for death of the loved elderly.
It is recommended for family members to try and get all paperwork (such as bank related, financial, legal, will etc.) of the person in order, as early as possible. If the elderly has earlier openly discussed about his/her future wishes, the family or caregiver must try and ensure that the elderly’s wishes are fulfilled.
As the end draws nearer, and the elderly passes away gently and peacefully, there should be someone in the room (loved ones or caregiver), being with them, so that they do not feel abandoned. Death is a scary thought for most people and no one is really fully prepared for it.
For a caregiver, there is nothing better than helping an elderly pass away peacefully as they would have wanted. Family members tend to remember, and are grateful to professional caregivers who took cared for their loved elders during the end-of-life period.