Is palliative care the end of the road?

What is Palliative Care?

Let’s consider the  good example of when cancer is diagnosed in a patient. The treating oncologist, gynaecologist or surgeon will decide on a treatment plan and this treatment plan depends on many factors.  After the full work-up of the patient, the doctor will decide, based on the type of cancer and whether it has spread , and treatment modalities that are available, what the aim of treatment will be. If there is a realistic chance of cure based on research of different treatment options, the intent of treatment is to cure. This treatment plan may include surgery, chemotherapy and radiation for certain types of cancer. If curative treatment is however not possible, the treatment intent will become palliative.

Palliative care is an approach followed by health professionals that has as its goal to improve the quality of life of patients, both adults and children,  and their families who are facing problems associated with life-threatening illness. Think of it as specialised care delivered by a team of health care professionals who are not only specialised, but also with empathy and compassion will assist the patient and their families on this journey after the diagnosis was made. Let us start with the biggest truth: As a principle palliative care affirms life, meaning it cherishes and has a positive and healthy attitude towards living, and regards dying as a normal process. Given that statement, it means that if  the doctor suggests that care from now on is palliative, treatment to control the disease and improve quality of life will continue. Palliative care is not limited to patients living with a late-stage terminal illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.

When does palliative care kick in?

If a diagnosis of a very serious disease is made, conditions referred to as life-limiting diseases – something like cancer (or severe heart failure, or  chronic kidney failure or  chronic liver disease or  multiple sclerosis as examples) it may be that with all the available knowledge and treatment options that are at hand , cure is unlikely, the treatment intent becomes palliative – in other words either to prolong life or in other cases to provide relief of symptoms and to provide comfort to the patient. Palliative care should ideally kick in when the diagnosis is made and the principles of the palliative approach is introduced by a team of health and other professionals inter alia  including the treating specialist, their family doctor, home nursing practitioners , physiotherapist, dieticians, psychologists and religious leaders.

In palliative care with a cancer diagnosis, the treating specialist may still include surgery, or chemotherapy or radiation therapy or a combination of the treatment modalities  with the intention to prolong life or to provide comfort and relief of symptoms like bleeding or pain. The treatment is adjusted in time as the condition of the patient improves or deteriorates.

Many patients with cancer cannot be cured but survives, sometimes for a long time, through the diligent follow-up and treatment of any progression of the disease. Thus, attaining the improvement that go with remission or control of progression will result in added years to life. The palliative approach aims at adding life to the remaining years.

This means that the trajectory of palliative care could either be a journey that lasts for many years with good or relatively good health.  In some instances, one must also be realistic where the illness, with time or due to a late diagnosis, has progressed and caused irreversible decline of the health and functioning of the patient. When diagnoses like cancer is made late  and has already progressed into the final stages of life, the care will be focused on comfort, symptom relief and support during the terminal stage of life and this care and support will also extend to the family of the patient and during terminal phase of the illness and also during their bereavement.  In these cases, the healthcare team will not hasten but will also not postpone death where there is no quality of life or where suffering will only be prolonged.

So, does palliative care mean the “end of the road”?

It is definitely NOT the end of the road. The reality is that most people who need palliative care is not dying. Let us start with the biggest truth – as a principle palliative care affirms life and regards dying as a normal process. Given that statement, it means that if  the doctor suggests that care from now on is palliative, and where appropriate, treatment to control the disease and improve quality of life will continue. In patients diagnosed with a life-limiting disease, it is useful to think about the  trajectory of life living with cancer that will follow. Each of these phases in the trajectory requires a very specific approach to management of the patient and support to the family. With cancer the first phase of this trajectory may be relatively stable disease or slow progression of the disease. This phase may take years and the oncologist may still actively treat the disease with chemo or radiation therapy to limit the impact of the tumour on quality of life and to prolong life. Palliative care during this phase of active treatment may address problems and issues that is caused by the treatment of the cancer or the tumour itself.

Inevitably the  steady progression of the disease over time tips the point into  a  more rapid decline which usually indicates a clear terminal phase. At this stage of the trajectory the  specialised treatment by the oncologist, the active cancer treatment, may be discontinued. Then a new treatment plan is required for the terminal phase of the trajectory of life with the disease. This phase focusses on providing comfort, relieve of symptoms of which pain is important and to see that the necessary food and fluid intake takes place. This process of supporting the patient and the family continues with increased intensity until the demise of the patient.

Take home message!

It is important to know that palliative care is definitely NOT the end of the road. On an international symposium on palliative care it was stated that “It is more about living better rather than about the issues that arise only at the end of life.”

But remember that teams of people with a special interest in palliative care are available to assist you and your family on this journey. The goal of these dedicated teams are to ensure a good death, with a patient having been symptom-free and happy in his own home surrounded the their loved ones.

This article was supplied by Dr Martin de Villiers, Family Physician at Medwell SA: Home Health Care Specialists.