The Final Journey: What Really Matters in the End

concept-farewell

The Final Journey: What Really Matters in the End

Through compassionate discharge, the palliative care team strives to ensure their patients have a fulfilling final journey in their preferred place of death

The journey to prepare for one’s death is never easy and can often feel overwhelming, as seen in the case of liver cancer patient Mr Simon Lee in the story “On Your Own Terms”. Mr Lee was restless and frustrated during his stay in the hospital and told his wife of his wish to spend his last days at home. The Tzu Chi palliative care team stepped forward to arrange for compassionate discharge and the required support for home care.

Six days after being discharged from the hospital, Mr Lee passed away peacefully at home. His wife, seeing his last wish fulfilled, was grateful for Tzu Chi’s guidance and help in navigating the challenges and uncertainties during her husband’s final days.

Like Mr Lee, most end-of-life patients express a preference to die at home, seeking peace, privacy and comfort in familiar settings surrounded by loved ones. For them, fulfilling this desire to spend their final days at home is of utmost importance.

Seventy-seven per cent of Singaporeans wish to die at home, but only 27 per cent were able to do so, the 2014 Lien Foundation’s Death Attitudes Survey found.

To close this gap, the Ministry of Health has set out to expand and improve palliative care in Singapore so that more professional and social support is available to meet patients’ preferences on this last journey.

In this vein, it is key to empower patients with the choice of where they would like to spend their last days, be it at the hospital, nursing home, hospice or home. Singapore Hospice Council’s member oragnisations offer a range of palliative care services, ranging from inpatient to home-based support, with the aim of allowing patients a dignified farewell according to their wishes.

For patients who have stated that they wish to pass on at home, compassionate discharge is a special arrangement to transfer a dying patient our of the hospital to spend their final days and die at home. This process ensures continuity of care as the patient transitions from inpatient services to the home. Before compassionate discharge can take place, however, patients and their families need to take some factors into consideration.

PREPARING TO PASS AT HOME

The patient’s end-of-life preferences should be discussed with the family and healthcare team as early as possible. The patient may have stated their care preferences in their Advance Care Plan, Lasting Power of Attorney, or Will, or expressed them in conversation.

Once the patient expresses the wish to die at home, a joint discussion between the patient, family, hospital and home hospice team (where feasible) will take place to plan and prepare for discharge. Some points of discussion may include the suitability of the patient for compassionate discharge as well as the patient’s condition and care needs.

Before opting for compassionate discharge, the family also has to consider their ability to cope with the various caregiving duties and the emotional stress of caring for their dying loved one at home. It is a heavy responsibility, as the patient may need constant care and support with activities of daily living such as showering and feeding.

For instance, the patient may spend most of their time in bed. Their caregivers would need to know how to help them in and out of bed safely and how to prevent bedsores.

In addition, some caregivers might be ill-equipped to care for the discharged patients’ medical needs. For example, they might not know how to administer medication, give an injection correctly or manage their symptoms.

The patient’s family may also need to make some home modifications to make it easier to carry out caregiving tasks. This could require the installation of medical or home care equipment, such as a hospital bed or oxygen supply, and even rearranging the home.

The family might have to consider designating more than one caregiver for the patient in order to spread out the care duties, as it is important for caregivers to have time for rest.

For those struggling with the care load at home, turning to a home hospice service may offer some respite. Caregivers can approach the patient’s doctor for a referral to a home hospice service for assistance.

Home care starts with a visit from the home hospice team at the patient’s residence. The team will visit regularly to help manage the patient’s pain and symptoms, train caregivers to provide care for the patient at home, and offer emotional support to caregivers and the patient. The frequency of these visits will depend on the patient’s condition, but the home hospice team is contactable around the clock for assistance.

BREAKING THE TABOO

In an Asian society, it isn’t easy to broach the topic of end-of-life care, according to Methodist Welfare Services (MWS) Senior Staff Nurse Hing Kai Kia.

On first contact with the hospice provider, family members may express surprise and respond negatively when the option of home hospice is initially offered.

“To these patients and their families, the word ‘hospice’ is already a taboo. Many of them feel secure when the medical team is there to manage symptoms, but they shut off when we talk about end-of-life care. Most of them are not mentally prepared to think about the topic of end-of-life care; they are just not here yet,” explained Ms Hing.

A former administrative staff member in a paediatric clinic, Ms Hing longed for a job that would bring her more joy and meaning. Although it would be her first time working with palliative patients, she decided to take up the challenge and joined MWS in 2020.

Since then, she has worked with patients in their homes who had conditions ranging from cancer, kidney failure, heart failure, advanced lung disease, liver disease, and advance dementia. They often have a prognosis of less than a year.

CARING BEYOND PHYSICAL NEEDS

To deliver “whole-person” care, Ms Hing works with a multidisciplinary team comprising doctors, nurses, social workers, counsellors, therapists, and trained volunteers.

There have been growing efforts to boost support for home-based palliative care services to provide patients at the end of life with comfort and dignity in their home. Through drawing up personalised care plans, the aim is to provide a holistic approach to end-of-life care that addresses patients’ physical, emotional, social and spiritual needs.

As part of her work, she helps to manage patients’ pain and symptoms, ensure patients adhere to their medication schedule and protocols, and train caregivers to administer oral medication or injections for their loved ones at home. Going the extra mile, she offers a listening ear and a comforting presence to patients and caregivers when they need it.

Ms Hing shared, “You must show a willingness to listen to their stories and precious moments while making sure they are as comfortable as possible. Just your presence and empathy could bring the greatest gift to the dying patient and their family members.”

On occasion, she has connected patients with MWS social workers to complete various legacy projects which make a world of difference to her patients. One such example was for a breast cancer patient who penned down her homemade recipes for her son. As a result of her dedication, caregivers of former patients have at times recognised her on the streets and expressed gratitude for her help.

It is worth noting that everyone has different needs during the last days of their lives. Some patients may have symptoms that can be challenging to manage at home. If that is the case, caregivers can consider allowing their loved one to be cared for in an inpatient setting, which can enable the patient to receive the appropriate care that they need.

MEANINGFUL LAST DAYS

Michelle (left) and HCA Principal Medical Social Worker Jayne Leong (right)

As patients spend the last hours or days of their lives at home, palliative care services are focused on offering them comfort, dignity and compassion, and creating meaning for them.

There are various home- and hospice-based programmes dedicated to caring for patients as they approach their final hours, for example, MWS Home Care & Home Hospice, HCA Hospice Care’s (HCA) Vigil Angels and Assisi Hospice’s No One Dies Alone, to name a few.

The multidisciplinary care team, when possible, would go the extra mile to support the patients in fulfilling their last wishes in the remaining time. One such example was a living funeral organised by HCA for cancer patient Michelle Ng.

HCA Principal Medical Social Worker Jayne Leong had first floated the idea to her.

Though such a concept was relatively new locally, Michelle embraced the idea with open arms. She saw it as a precious occasion to celebrate her life, express her love for the people around her, and say goodbye.

A plucky entrepreneur, Michelle was a go-getter who enjoyed cycling and running and working on her own wearables business, Kléo. In 2021, Michelle was just 27 when she was diagnosed with a rare ovarian cancer. A year later, the cancer had spread rapidly and chemotherapy had little success. With a poor prognosis of just months and her health on a decline, Michelle decided to spend her remaining time at home with her loved ones, supported by the HCA team.

In late December 2023, Michelle organised an intimate gathering for her family and dearest friends in her humble HDB flat. The cosy space had been newly renovated and was decked out in sage green and cream colours. Her favourite singer Rai — one half of her favourite local band, Jack and Rai — performed a couple of sets.

Local musician, Rai, performed at Michelle’s living funeral

At Michelle’s request, friends brought along a book gift to exchange to symbolise the exchange of knowledge. Others penned heartfelt final letters to Michelle, which she would read later in private. The event saw many tears shed, hugs exchanged, and heartfelt words.

Addressing her friends, she said, “Thank you for making me so happy today. Your presence is so much appreciated. I am grateful to hear every single laugh, to see every single smile.”

Friends and family of Michelle gathered to attend her living funeral

She passed away peacefully on 2 January, 2024.

As patients and their families navigate the twilight of life, they treasure each day as a precious gift. With the support of home hospice teams, patients can spend their final days in the comfort of their own home, focusing their remaining time and energy on meaningful connections and cherished goodbyes.

Photos: HCA Hospice

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