Author: karunashraya-team

In a day and age like ours, good lifestyle practises are comprised. We have breakfast that is instant, processed and easy to eat, on the go, work long hours while sometimes skipping meals, stay up late and grab just a few winks and most importantly, do not find time to exercise or meditate. We are caught up in a race for time, money, power and in general, life itself. When on the one hand technological advancements have made life easier, they have also successfully tipped the scale onto the other side with the plethora of side effects their existence brings with them.

It’s not of surprise that unhealthy lifestyles have paved paths for the onset of different types of diseases, cancer being most prevalent among them. We’ve all heard our friends or family members say that the incidence has exponentially increased over the last decade or two. Of course, there are other causes for cancer such as pollution, food adulteration, lack of hygiene, tobacco and alcohol abuse, and the list goes on.

Cancer Research

Cancer related mortality is a hot subject of research conducted in various universities the world over and many a time, in collaboration with the WHO. A study on the Indian cancer statistics conducted by The Lancet in year 2012, reported a staggering 5,55,000 cancer deaths in India, in 2010 alone. Also, research led by Dr. Prabhat Jha, the Director for Centre for Global Health Research, St. Michael’s Hospital, Toronto, in year 2012 resulted in a model that is now being used as a reference to compute cancer deaths in India. They employed a unique method of arriving at statistics by extrapolating information derived from studying cancer patterns and mortalities in our country between years 2000 and 2003, using a sample of households. Another notable agency is the International Agency for Research on Cancer (IARC) whose GLOBOCAN database forms the basis for recording cancer incidences in India. Similarly Dr. Jha’s model is used to study cancer mortalities in India. India Today iterated that cancer deaths worldwide were approximately 8.2 million in year 2012. Indian Council for Medical Research (ICMR) has projected that by year 2020, the total number of cancer mortalities in the country will be nearly 17.3 lakh. In year 2016, the highest number of cancer cases was estimated to be of breast cancer followed by lung cancer. With such daunting statistics in hand proven and projected through research, it is of great relief to come to the realization that advanced medical procedures are now available that have been found to increase the human life span by almost 30 to 40 years. Organizations that specialize in palliative care for terminally ill patients are the new go-to centres for families with patients suffering from chronic illnesses.

Palliative Care in India

In India, the utility of palliative care in improving the quality of life of terminally ill patients took long to be fully recognized by the law. Some key reasons were uncertainty and fear of use of morphine and other opium-based drugs for alleviation of painful symptoms, policies that were existent in the 1980s and 1990s when it began to gain momentum, that strictly prohibited this practice, and a general lack of awareness and interest in the subject. The establishment of the Narcotic Drugs and Psychotropic Substances Act (NDPA) in 1985 further made it difficult to convince the government about the advantages of palliative medicine. Eventually, the central government initiated measures to implement it but its instructions to the state governments to soften their narcotic regulations fell on deaf ears. The NDPA has been considerably modified over the years but needs to be implemented effectively by some state governments. Access to opiates remained a problem with some states where they had to gain its access from neighbouring states for their centre’s functioning.

This approach slowly gained popularity in mid 1980s with the advent of “hospice and palliative care movement”. Such care centres were first established in Gujarat in the 1980s following which Indian Association of Palliative Care (IAPC) was formed and till date is considered one of the milestones in the history of palliative and hospice care. This type of treatment is not only directed towards alleviating physiological symptoms but also aims to address psychological symptoms of both patients and their family members.

With a 1.2 billion population, less than 1% of our country’s inhabitants have access to palliative care. Today, Kerala is one of the states in the country to house maximum number of such centres with Tamil Nadu and Karnataka following closely behind. Continued advocacy by the palliative care community bore fruit in 2010 when the Medical Council of India accepted palliative medicine as a medical specialty and announced a post graduate course in the subject. This step was crucial to influencing the expansion of this practise in the country.

Karunashraya

Karunashraya is a non-profit organization in Bangalore, that recognized the need for a care centre for terminally ill cancer patients and made offering free palliative care to them, its mission. It adapts palliative care measures which constitute medical treatment procedures that reduce pain and other agonizing symptoms and improve the quality of life of such patients. The first hospice of its kind in India, their team aims to help patients who seek their support, get a life free of pain and one filled with dignity and peace. Having been operational since year 1995, they offer both inpatient care and homecare with the flexible option of the patient shuttling between the hospice and his/her home. Their work has been acknowledged by 15 awards.

The Team

It is run by a Board of Trustees who leave no stone unturned in dedicating time to this cause and ensuring efficient functioning of the centre’s activities. The organizational structure is orderly and favourable to the mission of providing free palliative care in a manner that gives respect and dignity to the patients. The homecare and inpatient teams comprise well trained and dedicated doctors, multi-disciplinary nurses, physiotherapists, health assistants and social workers who give free palliative care including counseling and non-curative treatment. This endeavour is ardently supported by patron organizations and corporations who extend funds to Karunashraya.

Statistics

They have more than 150 staff members who diligently work day in and day out to tend to their patients in the best manner possible. They have extended inpatient care to as many as 14000 cancer patients and homecare to 3500 patients. Whether inpatient or homecare, their services are free of cost. A good number of volunteers get on board every year to lend their services to this cause.

Education & Research

As is primary to any organization that aims to deliver top quality services, even Karunashraya gives priority to education and research. Since the concept of palliative care is fairly new and was introduced in India only in the 1980s, they pursued and currently have tie-ups with reputed centres and universities such as NIMHANS, Severn Hospice and Cardiff University to leverage and foster education, research and training in the fields of hospice and palliative care.

Located on Old Airport-Varthur Main Road, its calm and clean atmosphere and dedicated workmanship have been testified by the loved ones of many patients who were under their care.

www.karunashraya.org

Old Airport – Varthur Main Road,
Kundalahalli Gate, Marathahalli,
Bangalore – 56 0037, INDIA
Phone: +91 80 4268 5666, 2847 6133, 2847 6509
E-mail: info@karunashraya.org

Have you ever had an ailing family member in your vicinity day in and day out? What would be the first thing you’d do when they’d need help? Surely you’d rush to them and do the needful, possibly help feed them, clean them or just simply have a chat with them.

Care givers and what they do:

The same kind of tasks are done with as much care and love, by caregivers who are trained in the intricacies of care giving for patients suffering from chronic or terminal illnesses.  They literally become the beacons of service-mindedness in their endeavour to deliver their “job”. Their lives revolve around administering medication, booking consultations with doctors and other specialists like dieticians, psychologists, etc. and in some cases, even feeding, bathing and cleaning their patients. They shift focus from themselves to their patient, with a smile. So lost are they in their mission of catering to the needs of the patient they are entrusted with that they often end up not taking care of themselves. Wouldn’t you think such a person who is a personification of patience & care giving should also take care of herself/himself? In fact, caregivers should first take good care of themselves as one cannot take care of another individual unless (s)he is healthy.

Personal Care is Important:

We are always told to eat on time and sleep on time, take our medicines, if need be, on time, regularly exercise, meditate to keep our minds calm and fill our minds with positive thoughts. The simple reason behind this is good health. Imagine the problems that care givers will have to face in case they do not regularly take care of themselves. They might feel exhausted during their work hours, feel weak or fall sick. This is why it is reiterated that they pay as much attention to themselves while they are in charge of another person’s well being.

Effects of Care Giving on the Health & Well-being of the Caregiver:

Unfortunately, many a time the caregivers tend to get adversely affected by their nature of work.  Caregivers handle different types of patients with illnesses of different magnitudes and sometimes for many years. It is bound to have some effect on their well being if they are not constantly aware of their emotions and behaviour. Some repercussions are:

• Sleep deprivation
• Extreme emotions
• Failure to eat or sleep well
• Postponing their own health care
• Stress & anxiety

When we start to wonder about why this happens, we begin to realize that these things sometimes happen without their knowledge. What might be the support available to them?

Support Available to Care Givers:

Many Palliative Care centres extend succour to such caregivers so as to help them cope with their issues.

1. Psychological support – Consultations with psychiatrists and psychologists are made available to them to address their personal problems.
2. Peer Support Groups – Such groups tend to work in relieving stress and strengthening not only the bond between all these people from the same background but, even in personal strengthening. You might know that when you offer advice to another person, you feel you are in a better position than him/her.
3. Caregiver Helpline – Many palliative care centres have a helpline for the caregivers in case of emergencies. This way they can reach out for help when they do not know where else to go.
4. General Training in Palliative Care – Such vocational courses equip students (prospective caregivers) with the skills and knowledge of what they will be dealing with on a day-to-day basis. They are coached on how they should take care of themselves both physically and mentally. Handholding them through this process by giving them an insight into what they can anticipate, generally makes these trainings holistic and helpful in the long run.

When does one find the need to let go or suggest to another person that they must let go of something or someone? It is usually when a circumstance or situation is bound to cause pain, disappointment, sadness or any other emotion that might have a negative impact on us.

It is often challenging to just let go and this is because we tend to relate instances in our lives to some sort of an emotion. The emotions we feel are driven by the nature of the people involved or some past experiences with them, etc.  The same applies even to inanimate possessions. Emotions are not only felt but are perceived from others as well and this is the core of human existence and evolution.

Dealing with the loss of somebody we know can affect us to different extents depending on who they are. This is related to memories or experiences with them. If it is somebody very close to us such as a family member or a good friend, the grief over loss is much deeper than when we lose an acquaintance or a co-worker, when it might come as a jolt and cause brief sadness. Letting go of memories and emotions that remind us of the latter is fairly easier than in the case of the former. Different people have different ways of dealing with grief. Our lives might seem to have come to a standstill but the reality is that it must go on, nevertheless. Thus, it’s imperative that we come to terms with such situations.

General ways by which such suffering can be reduced:

1. Acknowledgment of the emotions that one is feeling at the loss of somebody they know could be a good release mechanism. The emotions could range from anger to lowered confidence to extreme sadness and disappointment. In some other cases, when the death of a loved one follows immense suffering on the part of the departed, many people feel a sense of relief and peace. Some people like to be alone and connect with themselves in order to come to terms with the occurrence. Sometimes, talking about it with another person helps vocalize thoughts and contributes to the process of moving on. Actions like crying actually reaffirm this acknowledgment effort.
2. Channelizing our energy spent on crying and being bitter, towards something more meaningful helps lighten the burden. Some people choose to immerse themselves in social service to spread awareness on their experiences whereas some others find socializing more, meeting new people and engaging themselves in regular routine activities helps them get past this phase.
3. Only when faced head on with such a situation do we realize the worth of the one who has passed and also of those who are still alive, and start pondering on the purpose of life and death. With the right kind of support, this propels us to discover and pursue whatever we discern to be our purpose for this life. Thus, it becomes important to surround ourselves with loved ones during this time of grief.
   In the recent years, scientific advancements and research have gifted us with the concept of palliative care that is extended to terminally ill patients as well as their families. It is a multidisciplinary approach to providing treatment to such patients and facilitates inclusion of positivity and dignity in their last days. Thus, suffering patients and their loved ones receive support from these centres that specialize in medical procedures that alleviate the

When you find out that a member of your family is suffering from a terminal illness, it turns out to be a devastating situation. Many of us don’t know how to react, what to say to each other or the patient or, what to do next. We wish we could just pretend like nothing has changed from yesterday, and behave normally.

 In some other cases, the disease might’ve progressed from bad to worse over a period of time in which case the family will be well aware of the changes that they might have to prepare for. Consultations with doctors generally engage family members of the patient so that:

• they are aware of the characteristics of the disease & its impact on the patient
• they have their consent for suggested medical procedures

There is no way that we can imagine getting through a situation where a family member is terminally ill, without awareness on the disease and its manifestations, a heads up on how soon to expect death, or how we can take care of ourselves and them in the best way possible. It is but evident that the idea of caring for a loved one who might pass on soon is disconcerting and scary. Many of us would’ve rarely encountered that kind of a situation before. All our skills and prowess developed over the years might suddenly seem like they count for nothing.

All of the above might be true. However, there is no need to feel like all hope is lost. There are very many families that handle such predicaments fairly well. Their love for the ailing person invokes a desire to become strong and keep the patient happy in his/her last days. This is an act of bravery and often requires a lot of work & some form of motivation or support from external sources. The good news is that there is support available for such family members, which helps them with realizing and adopting favourable coping mechanisms.

Coping Mechanisms that family members of ailing patients adopt:

When even the slightest of setbacks or problems at work or with friends cause emotional outbursts, it is but common to expect that repercussions of such events take the form of psychological manifestations. Following are some means by which these family members are advised on coping with their situations to help segregate the negatives from positives and focus on the positives.

1. We side with the fact that communication is the key to resolving problems. This saying holds good in this scenario as well. Many family members talk to each other and confide in each other to feel lighter. Knowing that there is somebody who’s shoulder they can cry on is a comforting feeling. Communication may be verbal or written, as long as there is some sort of dialogue between a person and his/her immediate family members. This is categorized as emotion-focused coping strategy. Psychiatrists and psychologists generally offer this form of support.
2. Another approach is cognitive distraction that is also an emotion-focused strategy where certain activities carried out by family members of ailing patients help distract themselves from the painful situation in hand. This primarily limits the attention and concentration of these people and as a consequence, from instinctively reacting to everything that takes place. Again, psychiatrists and psychologists provide support in this direction.
3. Many seek out support groups to meet people from various backgrounds and walks of life, all ultimately dealing with a similar situation of caring for an ailing, beloved family member. This makes for a platform where people can freely share their experiences, emotions and hardships and also cry as it is central to coping strategies to get the weight off one’s chest. All the people in such groups understand each other’s situations and circumstances well.
4. Many of us have faith in god or some form of divine intelligence. There are spiritual groups that bring together people from the same faith and take them through prayers and spiritual discussions that aim at health appraisal. It helps to keep ourselves connected to that faith through worship at a holy place or just spending a few minutes everyday, on prayers. You might want to take some alone time to do some reflection on the day’s happenings and introspect on your behaviour and reactions to situations. Spiritual growth and connection with oneself makes for good grounding and maintenance of favourable mental health. You cannot give until you have!

These mechanisms work differently on different individuals considering the backgrounds we might be from, the strength of the relationship shared with the ailing family member, our upbringing and environment exposed to over the years growing up. Although above mentioned strategies are generally adopted, often psychiatrists and psychologists customize their application by these family members, for best outcomes. 

In earlier days, people suffering from serious, chronic or terminal illnesses were more or less resigned to their fate and had to deal with the pain and agony of the disease although medical support that was available. This was because of lack of availability of intelligence on how to treat intricate symptoms of such diseases so as to elevate the quality of life of such patients. However, with advancements in medical studies and research, today a subject called Palliative Care has come to the forefront when it comes to managing such diseases. It adopts a multi-disciplinary approach, aims to work towards ameliorating painful symptoms of patients and also providing succour to the family members and dependents of patients.

Initial perceptions of palliative care treatment were connected to advanced stage cancer alone. However, this is a medical path that is available to treat and manage people with AIDS, Alzheimers, Parkinson’s, etc. as well. This type of care is delivered through a trained team of doctors, nurses, psychiatrists or psychologists, dieticians and other specialists who diligently treat their patients based on the nature of the disease, age of the patient and other determining factors.

Specific features of Palliative Care that make it a special field in medical studies:

1. Palliative care is not restricted to terminal illnesses

   This type of care is delivered even to patients who have serious illnesses but who are not necessarily in their terminal stages. Many patients receive care and return to their homes.

2. Customized care for different medical cases

   Different patients have different requirements with respect to their treatment and quality of life they desire. Some of them ask for the best possible quality of life irrespective of the number of days they have left, in case of terminally ill patients. Some others wish to live long with the best quality of life possible. Thus, the palliative care team consults the patient and his/her family in order to design best treatment procedures conducive to their wishes. Medical procedures to reduce pain, psychiatric support for the patient and family members, a positive environment with trained caregivers taking charge of day to day routines of patients and compassionate doctors foster this kind of treatment.

3. Strong communication strategy with the patient’s family and friends

   The team will be put together based on the case in hand and they meticulously design treatment methods based on the requirements of the patient. This is done through spending time with the patient and his/her family members and thoroughly understanding and assessing their emotions and requirements. All medical procedures and available options are laid out for them so as to help them choose the best suitable route to satisfactorily receiving treatment.

4. Holistic Approach

   Palliative care encompasses all realms of medical treatment that need to be offered to patients suffering from serious diseases and painful symptoms. Their services generally include educating patients and their family members on treatment and medication, providing comfort not only to patients and their families but also to the caregivers who work round-the-clock and also making available palliative care training options available to those who wish to get on board.