There is a lot of misconception about palliative care, on top of very low awareness among the public and even healthcare professionals. Without proper education and information, it will be a continuous struggle to get people to appreciate the benefits of, and comfort it provides.
Dr Luzviminda Kwong, pain management and palliative care specialist, sat down with MIMS to share the challenges and frustrations she has had to deal with when it comes to palliative care. A practitioner since 1994, she is disheartened by the fact that there has been little progress to make Filipinos embrace the concept.
She is affiliated with the National Kidney and Transplant Institute, as well as St. Luke’s Hospital and Quezon City General Hospital.
Not a cure
Patients, their families, and doctors need to understand that palliative care is NOT a cure. Treatment of a disease is still left to attending physicians. And palliative care specialists will never encroach on that when patients are referred to them.
It is a form of caring, Dr Kwong emphasized. “You don’t intend to cure. Curing will be done by medical oncologists. Surgery by surgical oncologists. But when you’re diagnosed with cancer you’re devastated, depressed… at times, you can’t move or stand. That’s where we come in.”
The confusion perhaps lies in the fact that pain management is a primary component of palliative care. And majority of the time, patients or their families simply want relief from excruciating pain and to ease suffering.
Another reason is because when a palliative care specialist is called in, the likelihood of discontinuing other forms of treatment, such as chemotherapy or dialysis, is greater. But justified, she explained, as families are usually at the end of their financial rope, or the cases are terminal with no cure.
In such instances, Dr Kwong conceded she does advise to stop further treatment and do what is necessary to make a patient feel comfortable in spite the pain.
Not only for the dying
A second mistaken notion about palliative care is that it is only for dying cancer patients. The pain management specialist has been taken aback many times after hearing peers claim that it was only end-of-life care.
She cites an experience with a stroke patient who was feeble and contracted pneumonia but could not expel mucus. The recommendation was traechostomy, which the family rejected. The only remaining option was suctioning, a painful exercise, which the patient refused.
Dr Kwong gave the meds to manage the pain so the patient could be suctioned, which a colleague questioned, on grounds she was neither a cancer patient nor terminal. The intervention, however, enabled suctioning and eventual treatment.
This lack of understanding about palliative care even among medical professionals is perhaps why patients are only referred to her when they are close to expiring and very little can be done. Still, the goal, whether for a day, a week or months, is always to make them as comfortable as possible, and it starts by taking away their pain.
It is frustrating, she admitted, knowing a patient has been suffering from pain over an extended period, which she could have helped ease earlier had the patient be referred sooner.
Another downside to being called in too late is not having the time to talk to, and prepare, the family for their coming loss.
Not mercy killing
There is one unforgettable experience that Dr Kwong shared to illustrate the biggest misunderstanding about palliative care. Each time she receives a call from a patient or their families, the first thing she wants to know is if they understand what palliative care entails.
“What do you need from me, what do you want me to do?” she asks. The one reply that disappointed her was, “Our patient is terminal and we want you to manage him. Give him medication to make him sleep so he does not wake up.”
Her quick retort was: “Oh sorry you made the wrong call.” It was the first time she had ever received such an answer, which she will always carry with her.
Her probing questions was the result of a feeling that the family’s perception about the specialty care was “off.”
Unfortunately, there are families who think that is what palliative care is about – giving medication to make a patient stop breathing. “I don’t do that,” she declared.
Yet, there are many who think palliative care is euthanasia, she explained. ”That is one reason why there are people who refuse to be referred to palliative care specialists… because of the wrong concept. Their understanding about palliative care is it is for the dying. For you to die. Terminal yes. But they don’t get the whole picture and simply interpret it as euthanasia.”
Palliative care is allowing the natural death to happen. In the most comfortable way. To stop what is no longer necessary, Dr. Kwong stressed.
It is contending with so many myths about medication for pain management that is the biggest barrier to acceptance and understanding the role of palliative care in the healthcare system.
Dr Kwong said initial consults usually last 30 minutes to an hour to dispel wrong notions, and every time she sees a patient, there are still as many doubts and questions. Explaining is necessary, otherwise they will never gain the confidence to agree to pain management and the delivery of palliative care.
Morphine is not addictive. It does not damage the liver or kidneys. It can be taken on an empty stomach. It is safe for someone who is very young (4 years old) and the elderly (70 years old). These are things she must repeat over and over to clarify and open minds.
The key is knowing how to administer opioids, which Dr Kwong is trained to do, and teach a patient to determine their level of comfort, and when medication is needed.
Sometimes, attending doctors are ready to discharge patients, but Dr Kwong vetoes this simply because she is concerned that once back home, they might not know yet how to manage the pain and be comfortable towards the end of their life.
Benefits palliative care
The best argument to getting palliative care, other than managing pain, is cutting down on costs. Not only for patients and their families, many of whom eventually have financial issues in the long run for someone who is hospitalized, but for government, which shoulders costs of indigents.
Dr Kwong noted the no balance billing policy, which drains millions in government funding for healthcare. “But with palliative care, it will prevent the further drain of finances, and resources can be allocated for more worthwhile cases. That is the problem with no balance bill. There should be a limit. It takes away funding for those that really need it.”
More than 20 years in practice, yet making inroads is still a big challenge for palliative care. Dr Kwong, however, will soldier on, to make more patients aware and her colleagues in medicine more receptive. Being doctors, after all, is not only about treatment or cure but providing comfort.