Supportive Care

The term “Supportive Care” is offen used for medical and nursing care when the focus is assesing and managing a patient's symptoms and the goal of care is, comfort not cure. The main focus of Supportive Care is to relieve the physically distressing symptoms of the patient. Supportive Care is often provided by family physicians, internists, critical care experts, specialists / super specialists and other support staff in the hospital only.

The goal of supportive care is to prevent or treat (as early as possible) the symptoms of a disease, side effects caused by treatment and psychological, social, and spiritual problems related to a disease or its treatment.

Palliative Care

Palliative care is an active, comprehensive care of patients, suffering from incurable, progressive, life threatening conditions, and their families by a multidisciplinary team. According to WHO, palliative care is an approach that improves the quality of life of patients and their families, through prevention and relief of suffering by early identification, impeccable assessment of their physical, psychological and spiritual distress.

Benefit of Supportive and Palliative Care

• Improves quality of life, interpersonal relationships and survival rates.
• Relieves pain and other distressing symptoms
• Prevents unnecessary hospital investigations, use of drugs / procedures, their side effects and complications.
• Saves valuable resources, helps in developing positive attitude and accepting the normal course of illness and its progression.
• Makes them understand, that with will power, they can work consciously and actively to live a symptom free, comfortable, independent and dignified life.
• Relieves suffering of family members, care givers and prepares them for bereavement.

How Does Supportive & Palliative Care Help?

• Enhances quality of life and slows down the progression of disease
• Offers support system to help the patient, live as actively as possible with dignity.
• Relieves pain and discomfort and other distressing symptoms
• Improves health and reduces disability
• Integrates the psychological and spiritual aspects of patient care
• Uses a team approach to address the needs of patients and their families.
• Offers support to help the family to cope during their loved one’s illness and their bereavement
• It neither hastens nor postpones death.
• It is started at the time of diagnosis with other therapies (intended to prolong the life) and continues throughout life.

Principles

• Palliative care is patient and family/care givers centric, it focuses on care and symptom relief, even when curing the disease is not possible.
• It is based on accurate assessment of physical, psychological, spiritual and social needs of the patients and their families.
• It is evidence based, clinically acceptable, safe and effective
• It is integrated and coordinated with oncology and other specialities / super specialities.

Who Needs Supportive & Palliative Care

Patients suffering from incurable life threating diseases, which require long term care and support, need Palliative Care. It is commonly provided in -

• Cancer
• Heart Diseases
• Lung Diseases (Chronic Pulmonary Obstructive Disease)
• Kidney Diseases
• Cirrhosis
• Stroke
• Alzheimer's Disease
• Multiple Sclerosis

Patients with above mentioned diseases require long term palliative care and support. Palliative care improves the performance status of patients and helps them live as actively as possible with utmost dignity. Early access to Palliative Care can improve symptoms, reduce unplanned hospital admissions, minimize aggressive treatment and enables patients to make choices about the end of life care.

Choosing A Dedicated Palliative Care Facility

Due to nonavailability of adequate number of dedicated Palliative Care Centers in North India, most serious incurable Patients have no choice but to go to neighborhood Nursing Homes/ Multispecialty / Superspeciality Hospitals, where focused Palliative care services are not available. Eighty Percent of ICU beds in these Nursing Homes/ Hospitals are occupied by incurable Patients.

Comparative Scenario For Incurable Patients Being Treated Palliative Care Centers/ ICU

Difference Between Palliative Care And Conventional Care At Multispecialty/ Superspeciality Hospital

Who Provides Palliative Care

Palliative care is a teamwork, where hierarchy is minimised and each team member is empowered to provide the best possible care in an environment of mutual trust and respect. Coordination is the most important part of teamwork. The pallative care team includes

• Palliative medicine consultants (Supported by all other specialists and supespecialists)
• Resident doctors
• Palliative care nurses
• Nursing aids and others support staff
• Psychologists
• Social workers
• Physiotherapists
• Spiritual Gurus
• Family members /Friends/ Paid care takers
• Volunteers

Distressing Symptoms which require Palliative Care

PHYSICAL SYMPTOMS

General Symptoms

• Unbearable Pain
• Fatigue without cause
• Inability to stand or walk due to pressure symptoms by tumors on the spinal cord.
• Swelling of the body
• Lymphedema (swelling due to blockage of lymphatic vessels)
• Bed sores
• Unbearable itching
• Fungus / maggots / pus in the wound
• Anaemia

Symptoms of Mouth and Stomach Diseases (Digestive)

• Dry mouth
• Mouth ulcers or whitening of tongue
• Change of taste
• Loss of appetite
• Difficulty in Swallowing
• Indigestion
• Nausea and vomiting
• Constipation or diarrhea, Stomach ache, intestinal obstruction.
• Jaundice

Symptoms of Poor Respiratory System

• Shortness of breath
• Cough
• Bleeding from mouth
• Pleural Effusion
• Hiccups

Symptoms of urinary tract dysfunction

• Frequent urination, incontinence
• Spasms of urinary bladder
• Difficulty in passing urine
• Inability to pass urine
• Inability to evacuate the bladder completely.

Symptoms of Central Nervous System

• Dementia (forgetting- not even knowing that he/she is hungry and thirsty, whether he/she is feeling hot or cold, etc.)
• Raised intracerebral pressure, headaches, vomiting and blurred vision, diplopia
• Seizures
• Paralysis
• Alzheimer's disease

PSYCHOLOGICAL, SPIRITUAL, SOCIAL AND ECONOMIC PROBLEMS

Every patient has different psychological, spiritual, social and economic problems. This depends on their age, conditions at home (family relationships and economic conditions). Relationship with others (family, friends, colleagues, subordinates/ employees) the way they have spent their life and were they able to achieve their goals, what kind of life they have led etc. The minute thought comes in their mind that, they do not have much time left, it is natural that, the following problems hit them like a tsunami and they start thinking in silence about ...

• What will happen to my family and my children?
• What will happen to my business/ Job?
• How will the household expenses be managed, after my death?
• How will children's education, upbringing and marriage take place?
• To whom should I entrust the responsibility of my family and unfinished work, before death?
• what will happen to my loans/debts, I can't take them to my next life - I don't want to leave this burden for my children. I have to repay the loan first and then do something else?
• How much will my treatment cost? If I have to die, why I should spend this money on myself, this money can be used for my children or someone else.
• I have collected so much wealth and nothing will go with me, in whose name should I transfer all this and how should I do it?
• Who all have I offended and with who all I am angry with, should I call them all and say that I have forgiven all of you and now you also forgive me.
• I thought that I would tell the family to donate my body parts, but now I will not be able to do so.
• Who will look after me at this stage of my life and while taking my care, will it affect their study and work? Should i commit suicide?
• I have neither helped anyone nor have made good relations with anyone in my life, I am guilty, and I am being punished for my sins.
• I have been a self centred person all my life, never believed in the God or followed the path of Dharma, did not do any work for the wellfare of the society, did not evolve myself spiritually, will I go to hell? Oh what will happen to me?
• Should I change myself for better and do some good deeds, shall I donate my wealth for a good cause?

All these thoughts come because patient puts a question mark on his/her own life. This Tsunami of emotions causes some people’s personality and behaviour to change suddenly. This change in behavior could be both positive or negative.

Positive behaviour

Calling loved ones, sharing one's thoughts and explaining to everyone that...

"I have lived my life well and have fulfilled all my desires. My time has come now and I would like that after my death, you should feel that I am always with you. By following the path given by me, treat all people as equal, do good deeds as much as you can and always have respect for people. Effortlessly accept all situations and challenges and try to get ahead. Take care of each other and do as much for public welfare as possible."

Negative behaviour

Confusion, nervousness, sleeplessness, not eating, anger, outbursts, crying spells, becoming silent, blaming oneself and locking oneself in a room, attempting suicide, self-beating and not obeying anyone. Sometimes these changes are also due to drug overdose and side effects of the medicines.

What is the Difference Between Palliative Care and Hospice?

Palliative Care treats the symptoms to provide relief (inspite of the fact that, it cannot cure the disease). It starts with diagnosis and continues all through the life.

Hospice Care When it is clear to the entire treating team that no treatment is benefitting the patient, all treatment is stopped and Hospice Care is started. Objective of hospice care is to relieve pain and provide maximum comfort with love, compassion and dedication. There is no intention to improve the life span.

Unlike Palliative care, Hospice Care is given only at the end of life.

Where should palliative care be given?

Palliative Care can be given at Home, OPD, Day care and Palliative care centres. It depends on the personal needs of the patients and attitude of the family.

At Home

As long as there are no major symptoms and family is capable of fulfilling the primary needs of the patients, it can be done at home. The caretaker must ensure that patient’s need for oxygen, nutrition, wound care, urinary catheter, feeding tube care, giving medicines at time, bathing, exercise, physiotherapy etc are fully addressed. They must inform the Home care team, if need arises, or take the patient to the palliative care centre, for follow up or to the Emergency Room. Care taker must be capable of identifying the emergency situations, requiring hospitalization, which are as under:

• Breathing difficulty
• Sudden increase in the heart rate
• Hypoglycemia resulting in sweating, fainting, dry mouth, extreme weakness, tiredness, feeling jittery, nervous and tremors.
• Intolerable pain
• Inability to stand or walk due to pain in the back (Tumor pressing on the spinal cord)
• Hemorrhage
• Acute cramps, convulsions
• Sudden distress
• Swelling of face, neck and arms due to superior vena cava obstruction.
• Swelling of eyes, face, feet and legs due to kidney problems.
• Unconsciousness

At OPD

Some patients come to OPD or Day care Centre for adjustment of dose of pain killers, getting nerve blocks, getting tapping of fluids from lungs or abdomen, I/V fluids, blood or blood products, insertion or replacement of feeding tube, urinary catheter, tracheostomy tube, ostomy bag, dressing, counselling, physiotherapy and palliative radiotherapy.

In palliative care centres / Hospitals

When patients do not get relief from their distressing symptoms, at home or in day care, they need to be hospitalized. Usually hospitalization is necessary for relieving the most distressing symptoms. Once they are relieved, patient is discharged and advised to come to a OPD for followup. During hospitalization, care givers are also trained for providing home care.

Ethical Challanges in Palliative Care

Ethical decisions are highly challenging and have to be taken jointly by the patient and the family / loved ones; after detailed discussion with the palliative care consultant and the psychologists. The pros and cons of the decisions are explained to all stake holders, who are enabled to take the desired decisions about the following challenges:

• Withholding or withdrawing treatment

When the burden of life sustaining treatments, outweighs the potential benefits, one should not spare any effort (scientific and clinical) to free dying patients from twisting and racking pain that invades, dominates, shakes their consciousness and makes them incapable of thinking, saying and doing things they wanted to, before death.

• Do Not Resuscitate (Cardio pulmonary resuscitation)

Most of the times, futile attempts are made for cardiopulmonary resuscitation (CPR) to restart a patient’s heart or breathing.

Benefits and risks of CPR should be discussed with patients and families, so that they can take informed decisions.