“Being a doctor I have been dealing with patients with chronic illnesses, palliative medicine has proved to be a boon but as a healthcare professional one always feels helpless to these incurable diseases, I have been a witness, hence can say,
I know pain.”
– Dr. Shivani Vakilwala
A serious illness can not only cause pain but also mental issues to the patient and their family. It is a difficult time for each one and their families to know that they have limited time in this world and this is the time where there are outbursts of emotions with extreme confusion as to how to deal with such a situation. There have been so many cases where patients detected with chronic painful illnesses have chosen to end their lives as they cannot deal with the grief that comes to them and their loved ones. This is where palliative medicine acts as the last ray of hope to such patients, it does not increase their life span but surely increases their quality of living and helps them choose this journey of a painful life over death.
Palliative care is specialised medical care for people with serious illnesses, it gives the patient, their family, and the doctors an extra layer of support. It not only helps in treating pain but also other symptoms like shortness of breath, insomnia, mental health issues like depression and everyday day challenges that come with coping with a serious illness.
The following is an image depicting the approach of palliative care
One of the major achievements with palliative medicine has been its ability to decrease the number of suicide cases occurring with chronic illnesses due to social isolation, depression and anxiety. Patients who received at least one palliative care visit after the diagnosis were 81% less likely to die by suicide. Palliative care helps them live life the way they choose to live it. Palliative care incorporates psychosocial, spiritual care, decision making, patient education and assistance with end of life issues including home-based care, legal assistance, and financial assistance.
A palliative care team includes a doctor, a nurse, a social worker and other healthcare professionals specializing in palliative care. They spend as much time as needed to understand the patient’s situation, learn about what is important to the patient and make a plan for their care according to the patient’s values, belief, and culture. Therefore the sooner a patient chooses palliative care the better is their quality of life. It helps to shift the care model from being disease and organ focused to being patient and family-centered.
Several recent randomized control trials have found that when palliative care is provided early in the course of an advanced cancer diagnosis, patient tends to experience better physical and emotional outcomes. For example, the Early Palliative Care Study, demonstrated that adults with metastatic non small cell lung cancer who received early palliative care experienced less depression, improved physical symptoms and lived on an average 2.5 months longer than patients who did not receive the intervention.
Hospice care and Palliative care are two services which are often confused with each other.
Here is an image depicting the difference between the two:
Today, patients have more options for learning about their illnesses and a wider range of successful treatment options. They consult various medical specialists and can discuss outcomes with survivors, who can share experiences. Accepting palliative care is no longer seen as a decision to die. It has become a medical specialty.
But of course, it is not an easy task for the caregivers. They experience significant physical, emotional, social and existential burden, especially when the care process is prolonged and the disease is in an advanced stage. It is often seen that the needs of caregivers are neglected or overlooked. Additionally, we must consider the inability of the professionals to deal with patients in a situation of imminent death. Especially among the older caregivers, the emotional distress of loss, physical demands of caregiving and vulnerability occurring with age is a big burden on them.
Here is an image of the various aspects of palliative care and the challenges faced by the caregivers:
Image source: http://jaoa.org/data/Journals/JAOA/932038/marxfig1.jpeg
The American Board of Internal Medicine Foundation created a Choosing Wisely initiative with it’s focus on sparing patients from duplicate procedures, wasteful and harmful tests. It was received by the American Academy of Hospice and Palliative Medicine (AAHPM) in which the patients can ask the following questions –
1. What are the goals of the treatment?
2. What is the real prognosis and how long can they live with and without the treatment?
3. What can be done to improve the quality of life?
Palliative care has been in India for about 20 years. Obstacles in the growth of palliative care in India are too many and includes factors like population density, poverty, geographical diversity, the workforce at the base level. But we also have reasons to be proud as we have overcome many hurdles and initiatives have been taken to increase the power of palliative care. One of the important steps in the history of palliative care development in India was the forming of the Indian Association of Palliative Care.
Pain relief is often given low priority within health ministries. Despite increased awareness and multiple approaches to improving access to palliative care services, there remains a significant opportunity for further coordination across the healthcare continuum. Lack of knowledge has led to underutilization of palliative care.
It, therefore, becomes extremely essential for all health care providers to stress upon palliative care, spread more knowledge about palliative medicine and the government needs to make more initiatives to help for the same. Fully educating the family of all care options, assisting the family in setting their priorities is extremely essential. Let us make today the best possible day for the patients and their families.
7. The American Journal of Managed Care