Caring for the Ill and the Dying from A Distance

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IN 2012 my sister passed away from breast cancer. Days before she passed, my uncle flew back from Perth while my twin sister, who was working in KL at the time, crossed state borders to be by her deathbed.

Were her passing to have been in the time of Covid-19, all that would not be possible. Many have had to suffer that fate recently.

“I can only FaceTime with my father while he’s dying at home in Penang. I know he has just a matter of days left, but I’m unable to be by his side, holding his hand or to touch him," says Geena*, who is currently working in Australia.

Back home, Geena's family has been caring for her ailing father with the help of Charis Hospice. The hospice works with hospital teams to provide free home-based palliative care to patients with advanced illnesses. Before the pandemic, the nurses at the hospice regularly visited Geena’s family at home to assess her father's condition, control his symptoms, teach the family how to care for him, and provide psycho-social support for both the patient and their family. They also discussed end-of-life issues.

Dr. Oo Loo Chan.

The team has been a pillar of strength for Geena’s family. But since social distancing is now the new normal, the hospice has had to be creative in preserving the essence of palliative care. Face-to-face interactions have been drastically reduced and the team has had to be selective about home visits, while accelerating the use of telemedicine.

“Appropriate physical touch, like hugging, is such an important element of holistic care, not just for the patient but also for the grieving family. With the present situation, we now have to learn to reach out with our hearts, instead of our hands,” explains Charis Hospice’s medical director Dr. Oo Loo Chan. “My patients are a vulnerable subset. Right now, we don’t know who is asymptomatic with Covid-19, so they have to keep essential visits only to the hospitals and to manage as best they can with my team supporting them from afar."

Each day, the nurses would telephone the caregivers to provide support as much as possible, guiding them to anticipate and manage potential problems pertaining to symptom control and end-of-life care and, if necessary, arrange for sufficient medicine stock.

This may sound easy enough, but the reality is very different. “Talking about a loved one’s impending death over the phone, for example, can be very strange, unless you are skilled in the art of communication or have developed a good rapport with the family,” says Oo. “There are times when home visits are still conducted but with the necessary precautions taken, e.g. when the families are struggling with care or when emotional distress is overtly obvious.”

Though Oo is sceptical about it fully replacing home visits, adopting telemedicine may have to suffice for the time being. “Changes or new symptoms are easily missed if we depend primarily on the caregivers or on the patient's assessment alone. Home visits are still essential in providing emotional support and for building rapport, which is key to our effectiveness.”

A nurse from Charis Hospice with a caregiver.

Still, there are multiple advantages to be had in fully embracing telemedicine. For one, time and petrol can be saved, but ultimately, “if we strengthen our skills in telemedicine, we are able to help patients and caregivers familiarise themselves, for them to grow more confident in using it.”

Oo says, “I believe all of us are mentally affected by the pandemic and by the Movement Control Order; and the longer this stretches on, the more wound up we will get. My patients are no exception. Access to medical supplies, or even their favourite food, may be limited. If they measure their quality of life by being able to venture out as and when they please, then naturally, they will be agitated by what they are losing.

“But there is a silver lining for the group of patients who prefer to spend their remaining days at home. For example, it is highly probable for them to have a home-death surrounded by their loved ones, provided their family members are not stranded out-of-state or abroad.

“However, passing in the presence of family members may be difficult if the patient is living in a nursing or a senior home, since these establishments are quite strict about who they let visit. If my patient is admitted to the hospital with suspected Covid-19 – thankfully we have none so far – then he or she will likely die in isolation. Funerals will be conducted on a small scale with a limited number of people in attendance.

“Does that make the grieving process more painful for family members who were not able to be with their loved ones when death was imminent? Yes, it is likely,” she says.

* The names of the interviewees have been changed to protect their identities.

Emilia Ismail is a freelance writer who has a love-hate relationship with the weighing scale.



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