Palliative care — what does this really mean?

Hello, my name is Marcus Seah. I am a 2nd year medical student from Ponya. This is my medical column and the aim is to talk about medical issues, specifically those of public health. Public health issues concern the overall health of people rather than specific diseases and treatments. Dental care is one example. Many of these issues are worth giving a thought about, but are seldom discussed.

This series, in particular, aims to touch on life nearing death. This series is done with information obtained from interviewing Dr Alethea Yee Chung Pheng, senior consultant at the National Cancer Centre Singapore.

Dr Alethea Yee is the Head and Senior Consultant at the Division of Palliative Medicine, National Cancer Center Singapore. She graduated from Yong Loo Lin School of Medicine, NUS in 1993 and proceeded to the UK for postgraduate training in Internal Medicine with subspecialty training in Palliative Medicine. In 2006, she joined National Cancer Centre Singapore to run the palliative care service there.

Dr Yee is also actively involved in education. She is the Director of Education for Lien Centre for Palliative Care, Director of Nursing and Allied Health Education, Academic Clinical Programme and Program Co-director of Ngee Ann specialist diploma in Palliative Care Nursing. In addition, she sits on various centre-wide, cluster-wide, and national committees for medical training and service development.

Her research interests are in quality of life in advanced illness, care models and pathways, and education research in palliative care training.

This essay is part 3/3 of this series.

 

Palliative care is Dr Yee’s wheelhouse. With a sparkle in her eye, she directed me to World Health Organization’s definition for palliative care:

Palliative care is 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.”

Essentially, it is a way to help terminally ill patients improve their quality of life. The emphasis is living well before death, regardless of prognosis of the illness.

This approach is usually done by asking patients about their goals. Dr Yee classifies these goals into three broad categories, 1) Prolongation of life, 2) Comfort and 3) Specific goals. Each of these categories has its own problems that come with the benefits.

  • Prolongation of life means that all the wants is more time on earth. For end-stage cancer patients who want to live longer, they can be treated with palliative chemotherapy. In palliative chemotherapy, medicine is given not to cure the cancer (which has usually reached a incurable state) but to shrink it and eliminate the symptoms for a period of time. However, there are trade-offs for this. These are the side effects of palliative chemotherapy, such as hair loss, nausea, vomiting and fatigue. For patients with end stage renal disease (ESRD) dialysis can prolong life for many, but for the very elderly with ESRD, dialysis may be more burden than benefit. Another example would be antibiotics given to a patient with a bad infection. His life is prolonged but he has to stay in the hospital for the antibiotic treatment.
  • When a patient wishes for comfort, this usually equates to them not wanting pain or symptoms of the disease such as nausea, fatigue etc. For them painkillers and other symptom reliving medication can be administered.
  • Some patients have specific goals like living till next Chinese New Year, or till their granddaughter gets married in June or being able to walk to the bathroom. These goals are unique to the patients and bear a strong importance to them. If the goals are not beyond medical reach, attending physicians will often try to achieve them. However, time and comfort may be sacrificed.

Palliative Care to Alleviate Suffering

Setting these goals is unique and subjective to each and every patient because we all want different things. Each goal comes with its trade-offs and have to be accepted by the patient. They also have to be strongly considered under the counsel of the attending physician.

Aside from what the patient wants, the palliative care physician will also factor in the family.  The patient and family are seen as a unit because, many times, the family is also the caregiver, or is likely to be the ones most affected by the patient’s illness By helping the family, the physician will in turn provide better care for the patient because his/her caregiver is more equipped.

The palliative care physician does this by assessing the medical and non-medical aspects of this patient-family unit. These aspects cover physical, psychosocial, and spiritual problems. By doing so, the patient receives holistic care.

Holistic care is important because more often than not, you have drugs for diseases, but who will pay for the drugs, who will give the drugs, who will bring the patient for regular check-ups? Having the treatment is not enough; the patient also requires the access to those treatments.

One example I can remember is of a patient left with limited mobility and his caregiver is his wife, whose small frail frame cannot carry him — there lies a problem. “Palliative care looks at how to make things more bearable for the patient and his/ her family during a very tough time in their life” Dr Yee explained.

In Singapore, the palliative care professionals work in partnership with the attending physician of the patient. When a patient of an incurable illness, such as end-stage cancer, reaches a certain turning point, the attending physician will introduce palliative care.  From then on, the attending physician will work in partnership with the inter-disciplinary palliative care team to co-manage the patient..  There’s also good evidence now that early palliative care delivered alongside standard cancer care improves quality of life, reduces anxiety and depression and even improves survival. So, palliative care can be delivered anytime along the illness trajectory of a life limiting illness depending on patient’s needs.

The Continuum of illness

After telling you so much about the approaches and goals of palliative care, it must all materialise in some place right?

There are many places where palliative care can be delivered. The different care settings cater to patients at different points in the trajectory of their illness Believe it or not, Dr Yee tells me that some terminally ill patients on palliative care can appear well and stable.

The hospital consult teams are based in the hospital and manages those admitted there.  For those who are more stable, they attend palliative care outpatient clinics in hospitals and specialty centres.

Outpatient Clinics

At outpatient clinics, patients come on a regular basis and return home after the appointment. It’s very similar to seeing a family doctor.

Patients can also receive care right at home via home hospice services. These services include helping to adjust and plan the patient’s medication. They also provide caregivers with knowledge to care for patients and lend psychological support to the family.

Day hospices are for those patients who have no caregivers in the day time but these patients are usually pretty stable.

 

Home Hospice Care

Home hospice care involves nurses , social workers or doctors dropping in on a regular basis to check on the patient.

 

Home Hospice Care (2)

Day hospice functions like elderly day-care centres, except that medical treatments are allowed to be administered in such places.

For more critically ill patients with 3-6 months left, they are admitted to in-patient hospices to receive care till their time is up. Interestingly, some patients with complex symptoms also go to the hospice to get their symptoms sorted out before returning home for care.

After all this, I asked Dr Yee why palliative care mattered. Her reply was succinct: “the modern hospice movement arose because the dying had been ignored. Death has always happened throughout life, we have not found a cure for mortality. Dying is a taboo subject. It’s about time we relook at bringing dignity to dying.”

Palliative care is a way to live and die dignified.

(For more information about palliative care, please refer to the Lien Centre For Palliative Care’s website)

 

Images from: Image 1, Image 2, Image 3, Image 4, Image 5, Image 6, Image 7

About the Author

Marcus is a 2nd year Ponyan from Tembusu. In his free time, he studies medicine.