What is Palliative Care? A Complete Guide for Families
What is Palliative Care?
Palliative care is a proficient medical approach to reduce pain and distress symptoms and help to maintain a quality life, however the line of treatment addresses the ongoing symptoms / diseases without any cure.
Palliative care is provided by a specially-trained team of doctors, nurses. Palliative care is based on the needs of the patient, not on the patient’s prognosis. There is no definitive age but it helps in symptom relief in a serious illness, and it can be provided along with curative treatment.
Understanding Palliative Care
The method of palliative care is used to improve overall well being by not only addressing the illness but also be mindful about lifestyle and routine. Beyond symptoms management, it is a holistic approach to touch base physical sickness, emotional and spiritual well being.
It is a comprehensive support which allow patient to settle with comfort, dignity and enabling them to live as actively as possible despite their illness. Palliative care supports family and primary care givers emotionally, practically and hand hold the families to take corrective, timely measures and decisions so they can be more focused towards quality life without getting overwhelmed.
Palliative care experts treat symptoms and stress of serious illnesses such as cancer, heart failure, chronic obstructive pulmonary disease (COPD), kidney disease, Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS), and many more.
Who Can Benefit From Palliative Care
• Patients with serious or chronic illnesses – As per clinical study, most of the chronic illnesses (diabetes, cardiovascular disease , cancer, TB and neurological deficits) cannot be cured but effectively managed with medications, lifestyle changes but moreover acceptance of self health and willingness to improve quality of life.
• People at any age or stage of illness – Term “Palliative” means providing medical care / treatment to relieve the symptoms and this is age unbiased. Change of medical condition from acute to chronic has been customary due to lack of information and lack of medical services. It is not age related issue but all about aggravated clinical condition which reaches to a point where only health management system could work.
• Families and caregivers who need emotional and practical support – Palliative care is a comprehensive technique to manage patient’s health condition with symptoms management, hence team of doctors, nurses and counsellors are well trained and equipped to manage situation clinically as well as emotionally. Though the process is quite draining but with the help of expert, families and care givers could understand about maintenance of emotional and physical vitality because providing round the clock care to your seriously ill loved ones are exhausting. Hence it is always important to take timely counselling as per designed program, maintaining healthy routine with good diet and not to forget to have a good social connectivity.
Palliative Care vs Curative Treatment
Palliative care:
Curative Treatment:
Palliative Care vs Hospice Care
Palliative Care:
Hospice Care:
What Services Are Included in Palliative Care
When Should Families Consider Palliative Care
• Situations where quality of life is declining - When an individual reaches to palliative condition because symptoms are untreatable and quality of life begins to deteriorate, persistent pain and stress become the major part of daily living. Repeated hospital visits, loss of independence, poor appetite, and sleep disturbances further affect physical comfort.
• How early palliative care improves outcomes - Early identification of palliative condition with the help doctors, counsellor etc helps to reduce physical symptoms, emotional distress, anxiety, and depression. All such symptoms can reduce social interaction and overall well-being. In such situations, palliative care becomes essential to improve comfort, support emotional needs, and help patients maintain dignity and quality of life.
How Palliative Care Supports Families
• Guidance during difficult decisions – Palliative care team are well skilled and equipped to support during tough time when family is not able to make right decision or under dilemma for second opinion or change in line of treatment, that is where Palliative care experts help family to sail through and give them realistic picture without false hope except any miracle.
• Emotional support and counselling – Alongside with curative treatment, it is very vital to provide emotional support and counselling to family and patient as it becomes quite fearing to see declined physical health / cognitive behaviour, social acceptance and pain of bereavement.
• Caregiver burnout prevention – It is crucial to maintain both the caregiver’s health and the patient’s well-being. Caregivers often face physical, emotional, and mental stress from providing round-the-clock care. Hence care givers must take help from family to support in their day-to-day task, maintaining social connection and their own health hygiene.
• Bereavement and grief support – Life and death are inevitable and pain of bereavement will only be understood by the close family members, hence bereavement and grief support ensures family receive care, understanding, and coping tools during and after the end-of-life journey.
Where Is Palliative Care Provided
• Hospitals and specialty clinics – Every multispecialty hospitals in tier 1 cities and some in tier 2 cities have well trained palliative care health experts and counsellors, however in case of absence in the specialty, patient gets referred to centre of medical excellence.
• At home – On the basis of doctor’s advised, proper set up is being done at home for constant monitoring of vitals and other equipment to support organ functioning.
• Nursing homes and care facilities – If home dynamics and ecosystem do not support the kind of care then it is recommended to shift the patient to the centre of clinical excellence in order to maintain lifestyle and health function.
• Community-based programs - Recent studies indicate that less than 4% of India’s population has access to palliative care and considering the shift from acute to chronic illnesses, hence local bodies / government have taken initiatives by joining hands with health experts to create a community-based modules which would help those population who are deprived or have no access due to financial crunch. These community based programs help educating people to understand about the illness and how symptomatically treatment could be given.
How to Access Palliative Care
• Getting a referral from a doctor – Speak with the treating doctor without any hesitation and seek correct prognosis along with proper referral of team of experts.
• Questions families should ask healthcare providers – As a primary giver, once to get to know about chronic disease, you must be prepared to ask questions on treating time lines , financial obligation, suitable dynamics, pain with anxiety management, team structure alongside availability so on so forth.
• What to expect during the first consultation – Firstly primary care giver / family member / patient need to understand about the diagnosis based on investigations / diagnostics. How health experts would help to overcome or side effects, impact on lifestyle physically, emotionally and financially, emergency management etc.
How to Talk to a Loved One About Palliative Care
• Starting the conversation gently – When a patient has chronic illness, it becomes difficult for that individual to accept the fact easily which leads to get overpowered by fear and anxiety. In such situation close family member/ primary care giver has to gather the courage and take proper counselling from the health experts and conveniently approach the patient with empathy.
• Addressing fear and resistance – Resistance and fear are often not about refusing care or treatment but it is all about fear, loss of life ,abandonment and social rejection, hence it very crucial to acknowledge the emotional trauma, give clarity on misconceptions, do not rush for any decision but allow time to patient to first validate feelings and make sure of companionship.
• Involving the healthcare team – Healthcare team has a vital role to help family member/ primary care giver to answer or provide proper clarity with reassurance to patient emotionally and physically. Experts help family and patient about line of treatment, duration, lifestyle management and coping mechanism.
Palliative Care Frequently Asked Questions
• Does palliative care shorten life?
No palliative care does not shorten the life but it infact focuses pain management, symptomatic treatment, hand holding to overcome physical and emotional well being and there have been cases where proper palliative under supervision of health experts helped patient to live more than the life expectancy quoted during or at the beginning of the treatment.
• Can it be stopped or changed?
Palliative care is not permanent or fixed as it can be changed, paused or stopped after understanding the positive and negative impact on patient’s overall well being.
• How often does the care team visit?
Frequency of visits in palliative care depends on the patient’s condition, setting, and flexible based on need, increasing when symptoms worsen or during the final stages of life. Visits from palliative care team purely based on health condition and symptoms management and if in case of change of medication.
If a patient is stable then visit may vary within anywhere between 1-2 weeks to review symptoms. In hospital and hospice care the team is dedicated to visit on daily basis to monitor the vitals and progress, however at home care set up 24x7 trained nurse gets deployed with a standby support of other experts on call or visit in case of emergency.
• Is pain medication addictive?
Palliative care medication are unlikely to be addictive when used as prescribed. The motive is to give a relief from pain and anxiety which arises due to chronic health condition, hence the medication more works symptomatically to enhance the lifestyle.
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