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Letting patients live… before they leave.
13 March 2013

Watching a loved one’s physical being slip away as he or she takes that final breath before our eyes, even as we are clinging on to the hope that he or she will live, can be most excruciating.For some, the end comes unexpectedly, without having the chance to say goodbye or to do as one had wished, like passing on from home.

Surviving loved ones can often experience mixed emotions – including fear, anger, regret and guilt – as they find themselves bearing the brunt of such a painful situation.

So what is the role of palliative and hospice care and how do medical professionals decide when it is time to place one under palliative and hospice care?

Is there ever a ‘right time’ for medical professionals to make the relief of pain, loss of independence, and stress, their new focus of treatment for patients living out their remaining days?Dr Shirlynn Ho, Associate Consultant at the Department of Palliative Medicine, National Cancer Centre, says patients, “especially [those] with terminal illnesses where a cure is not foreseeable,” can benefit from the palliative and hospice care approach.

Agreeing is Dr Tan Poh Kiang, a family physician for the last 17 years. “I believe strongly that whenever it is clear that a patient’s medical condition is not likely to be reversed, when his or her prognosis is dismal and the end-of-life is foreseeable,” he says, “I will always begin to discuss with the patient and his or her family the possibility of engaging hospice care.”

“If one has to err, it ought to be that the referral is too early [rather than too late],” he adds.

Recognising, relaying and realising what’s best for the patient

Inertia is sometimes seen in doctors when faced with the prospect of referring their patients to palliative and hospice care for various reasons. In effect, doctors are given the opportunity – or, privilege – to take active measures to improve the quality of life for their patients, including treating various types of pain and suffering, failing which death may be hastened instead.

According to Dr Chan Kin Ming, a geriatrician with vast experience in both the public and private sectors, “there is always that fear that [a referral to hospice care] may become the easy way out.”

Medical schools teach
doctors to believe that we
fight the enemy (disease)
without giving up.There is always something
we can (or must) do for our
patients even those who
have only days left [to live]….
many doctors have never devoted time to reflect on
their own mortality.

– Dr Tan Poh Kiang,
a family physician.

“[S]ending their patients to hospice care may be equated to stopping treatment or ‘giving up’ which not many doctors are comfortable with,” he says.”I think there are doctors who are unfamiliar with hospice care and the work [that is involved], hence, leading to hesitancy in referral,” says Dr Ho.

“The first important task,” suggests Dr Tan, “is to educate lavishly so as to dispel common misunderstanding that engaging hospice service means to accept defeat and to give up aggressive treatment.”

“At the same time, it is imperative that the patient and family learn more about the spectrum of practical help rendered by the hospice care team,” Dr Tan adds.”I learn, time and again, that many families struggling with terminal patients are at a loss of what to do,” he says. “In these tumultuous times, even if they learn about the availability of hospice services, they are likely to resist due to lack of information or misunderstanding about the service. It takes the firm and loving guidance of a trusted medical practitioner to guide them towards accepting the help of the hospice agency.”

Importantly, the personal wishes of every patient and his or her family members are also crucial considerations for referral.

“[M]y general approach is to empty my mind of preconceived ideas of what [I think] a patient or family wants, and actually listen to the patient and family, their values, hopes and expectations,” says Dr Ho. “I will also take into account the family’s cultural background.”

“After coming to an understanding of the patient’s wishes, my job is to communicate the medical realities and how we can support them,” she says.

“Some of my patients actually told their families before that no matter what happened, they want to die at home,” says Dr Chan.”Ideally, patients should be allowed to be cared for at home or to die at home if families can provide and cope with the basic nursing care that is required,” he shares.

“Psychologically, they should be able and willing to provide that kind of care and accept that the patient will pass on from home.”

Ideally, patients should be allowed
to be cared for at home or to die at
home if families can provide and
cope with the basic nursing care
that is required…Psychologically, they should be able
and willing to provide that kind of care
and accept that the patient will pass
on from home.

– Dr Chan Kin Ming,
a geriatrician in private practice.

‘To cure sometimes, to relieve often, to comfort always’

Medical professionals, even when familiar with the role and benefits of hospice care, may take some time to get comfortable with the idea of initiating discussions on end-of-life care preferences with patients and their families.

For Dr Boon Jiabin, Medical Officer at HCA Hospice Care, broaching the subject proved a challenge at first.

“I started my job going into each patient’s home with a mental framework that was meant to guide me on what I would like to discuss by the end of my visit, rehearsing lines in my head on how I could and would break any ‘bad’ news or touch on certain issues during my conversations with my patients,” says Dr Boon.

“Yet, many times, things do not go as planned,” he concedes. “I guess that is the beauty of home hospice care as well… I began to realise the importance of listening and being there for each patient, journeying with them at their own pace and helping to provide comfort and care to them whenever the need arises.”

I guess that is the beauty of home hospice care…
I began to realise the
importance of listening and being there for each patient, journeying with them at their own pace and helping to
provide comfort and care to them whenever the need

– Dr Boon Jia Bin,
Medical Officer at HCA Hospice Care.

Dr Boon Jiabin (far right), and home hospice nurse, Ms Goh Sock Cheng (far left), sharing a happy moment with Mdm Doris Lee (centre, front row), a former beneficiary of HCA Hospice Care’s home hospice service, and her family.

Dr Boon also acknowledges that every patient is different, and that physicians should never let their past experiences or knowledge influence them into thinking that they know what is best for their patients every time.On that note, Dr Ho agrees that “even if a medical scenario is exactly the same, each patient and family is unique [and that] the process of decision-making and its outcome may be very different.”

“I had a female patient who was slowly progressing in her disease,” recounts Dr Boon. “When I last visited her, she had grown visibly weaker with a prognosis of short days… [despite feeling pain], the patient was not keen on medication.”

“During one visit, she held my hand and asked me if she was dying,” he says. “Holding back tears, I could only tell her that I thought she might be right.”

Dr Boon says his patient then chatted with him for a little while, reminiscing past home visits and her life’s experiences. The next day, the patient’s children informed Dr Boon that, for the first time in a long while, not only had their mother slept through the night before, she also had a smile on her face.

A few days later, Dr Boon’s patient passed on peacefully from home.

“As I look back, I realise that as readily available medication may be, the old adage, ‘To cure sometimes, to relieve often, to comfort always,’ still rings true,” reflects Dr Boon.

“The role of a physician is to provide comfort and that goes beyond our medical knowledge or our medicines,” he says. “Sometimes, our presence or a simple touch may be the panacea to bringing comfort to our patients.”

Treating patients with holistic and humane care

Palliative and hospice care professionals “must see themselves as part of a multidisciplinary team promoting the best interest of their patient and that of the patient’s family,” concludes Dr Tan.

“The mistake… is always thinking that we only have the option of either aggressive treatment or hospice care,” says Dr Tan. “The way forward is to grant terminally ill patients both aggressive treatment and immediate access to hospice services.”

Understanding what patients (and their loved ones) want when faced with a life-limiting illness is key to identifying how palliative and hospice care can contribute to the continuum of care for patients at this critical stage of their lives.

When approaching a patient with his or her best interest at heart, doctors may find themselves in a better position to assess and evaluate if and how the palliative and hospice care approach can enable, rather than disable, a patient and those nearest and dearest to him or her.

The contents of this article are not substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or the relevant qualified healthcare providers for any questions that you may have regarding a medical condition.