When we were informed this was the end of my mother’s cancer treatment as nothing else could be done, my first question was: “So what happens next?” Time was now too precious to be worrying over the next steps and emergency response measures when we should have been spending all our waking moments with her.
It was explained she would now be placed under palliative care to keep her comfortable and manage the symptoms. That sounded fair and thoughtful, but the implications did not quite register. What exactly would we be doing, if at all anything, when treatment was now over?
The World Health Organisation describes palliative care as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. This is done through the prevention and relief of suffering by means of early identification, assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Palliative care for children is described as representing a special care, albeit closely-related to adult palliative care, with an emphasis on the total care of the child's body, mind and spirit. It also involves giving support to the family.
It took 48 hours for me to wish I was trained in palliative care. Unexpectedly, my mother went into a coma after appearing to be out of it for most of the evening after the talk with the doctor. I was not strong enough to perform cardiopulmonary resuscitation (CPR) on her, though my fear was I might break her ribs, ironically. She had to be rushed to hospital.
Had we been prepared on palliative care while simultaneously being informed that treatment had come to an end, I strongly believe the outcome that night would have been different. The hospice would have walked us through the palliative plan, arranged an immediate home visit, advised on what symptoms to watch out for and what pain relief medications to administer and how.
Palliative care can take the form of home-based care or hospice care. No terminally ill patient, whether a child or an adult, should bear the news of being informed that they have six months to live and be sent home with no immediate concrete plan of how to ease their suffering. It is incredibly intense and distressing for family members to take care of a loved one who is undergoing treatment; the magnitude becomes two-fold once in palliative care.
It is not satisfactory to argue that the family is too distressed at that point to have the discussion considering that anything could happen from that point onwards. This is a discussion that must be had for the family’s and patient’s benefit. The fear of talking about death has no place when fighting to offer the best possible, pain-free, comfortable and peaceful death.
If the palliative care discussion is not immediate, then the scenario turns to a revolving door of checking in and out of hospital. This may appear to be to the benefit and relief of the family that their loved one is under hospital care, as opposed to at home where they feel and are ill-equipped and lack the resources and skills to take good care of an ailing family member. On the contrary, the loved one is at risk of picking up infections from the hospital, which takes a further toll on their already fragile bodies.
But, had the family been guided on how to manage the symptoms at home, given the guidelines on who to call when uncertain or wait for the specialist to arrive, they would not be robbed of spending precious time with their loved one commuting back and forth to the hospital.
Palliative care is clearly a most crucial form of care just like chemotherapy, surgery and other medical interventions we use to save our loved ones. Just like you trust to be guided through the treatment, be guided even in these last moments that alleviate your anxiety and put you at ease to cherish precious moments that you will hold on to forever. Don’t allow yourself or your loved one to be in distress and become helpless when there is specialised assistance available. Take the care being offered. If it is not being offered, there is no harm in seeking it out.
Well, after what appeared to be a rather long hospital stay, mum did come home, and we had scheduled home visits much to our relief. The specialised home care was required more than I had imagined. Weeks later, she was admitted in the hospice who took wonderful care of her, making sure she was ever so comfortable, pain free and at peace. Palliative care and the hospice gave my mother a calm send-off surrounded by those she loved.
I cannot recommend palliative care enough.
Writer works with an international airline on dispute resolution. [email protected]