On our awareness calendar August has no allocated cancer so I thought this month we could talk around a wide range of topics surrounding cancer starting with palliation.
However, it would be unfair of me not to mention that Wednesday August 1 was World Lung Cancer Day. Lung cancer is more common in high-income countries and accounts for a large proportion of cancer deaths. It is one of the deadliest forms of cancer and for a long time breakthroughs were stagnant. In recent years targeted therapy has changed the way lung cancer is treated improving survival in dismal cases. I am uncertain how this impacts outcomes in Low and Middle Income Countries (LMICs) as these drugs are still on the expensive side of the spectrum but the point is the treatment options are there. Lung cancer awareness month is in November so we shall look at it more in depth then.
Today I would like to share on the psychological aspects of palliative care. In oncology we believe palliation starts with a cancer diagnosis. The misconception that palliation is equal to terminal care results in a lot of people rejecting the service. According to the dictionary on my notebook (you are allowed to laugh out loud at this) palliation is ‘to make (a disease or its symptoms) less severe without removing the cause. The example used is ‘treatment works by palliating symptoms’. Another context is ‘to disguise the seriousness of (an offence)’ and the example used here is ‘there is no way to excuse or palliate his dirty deed.’ Lastly it can mean ‘ to allay or moderate (fears or suspicions),’ example ‘this eliminated or at least palliated, suspicions aroused by German unity’.
For all the examples medical or not replace the words with psychological and emotional symptoms in cancer. When people think of palliation they think of a hospice and wasted individuals. They think of physical symptoms like pain, vomiting and diarrhoea. Palliation seeks to improve the quality of life an individual on a physical, emotional and spiritual level.
The World Health Organization (WHO) defines palliative care as ‘an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.’
Often spiritual, emotional and psychological issues are overlooked when a diagnosis of cancer is confronted. It is not uncommon to find loved ones irritated by the lengthily family conferences we hold to deliberately explain the cancer and treatment options. People want to get to the tangible treatment. When I reply that this exercise is part of treatment I am often met with a startled look loaded with disbelief. The greatest satisfaction is when such family members appreciate the value of the sessions by the end of the cancer journey. Palliation is also directed to the patient’s caregivers.
WHO envisions that palliative care provides relief from pain and other distressing symptoms. Pain for most is a concept that can easily be understood and grouped with distressing symptoms but how about anxiety and disappointment? These are things that must be addressed. It is important to address how the diagnosis has disrupted the individual and their loved ones.
An important point WHO outlines in an expansion of its definition of palliative care is the affirmation of life and regarding dying as a normal process’. In our practice as oncologists we come across patients of different religions and beliefs but the fact that each life has purpose is across the board. Believing that the only way we beat cancer is by elimination is a superficial one. I have come to a different understanding. Patients who have given me the privilege of sharing their last moments have expressed knowing their purpose is fulfilled means they have won the battle against cancer. I lost my own mother to cancer and even though her death was somewhat unexpected there was a certain peace surrounding it. One of the things her priest said at her funeral was that when she wed me to my husband she had expressed to him that her life’s mission was complete as her last-born child and daughter was now married. Now anyone who knew my mother will know that her illustrious life was not trivial and she had many dreams besides raising her children and keeping her family a unit. However, knowing she had a life-threatening disease which she battled with for 3 or so years, she defined what was important to her truly which was teaching her children family values. And as she saw us settle into what was her definition of family she was happy to let go.
As such palliation should facilitate this reiteration process. It is a hard thing to do and needs effort, professional insight strength and depending on beliefs prayer.
The fact that palliation intends neither to hasten nor postpone death makes it even more important that appropriately qualified people must participate. Integrating the psychological and spiritual aspects of patient care offering a support system to help patients live as actively as possible until death. More than I can count with my fingers and toes I have reviewed patients in palliative care who are described as depressed but are not on any medication to mitigate this depression. It’s almost as bad as leaving pain unattended. There are numerous formulations and psychosocial methods by interview and interaction that can improve the mental health of cancer patients terminal or not.
As mentioned before palliation offers a support system for patients loved ones as well both during the illness and in the time of their bereavement. There is nothing wrong to continue seeing the palliative care team long after the patient is gone. The stages of grief each require their own approaches so it only makes sense for those affected to get help at each stage. Being part of a team helps families get through together rather than separate them.
Dear readers knowledge is power and you have the knowledge now so use it. Request for these things if they are not offered to you. It makes life a journey and not a burden.