The Healing in Dying

MWS Medical Social Worker Zann Wong received an alert that the condition of her patient, Mr Peter Pang, was rapidly deteriorating. His wife requested for Zann and MWS Assistant Chaplain, Chua Chiew Poh, to pay an urgent visit. When the MWS team arrived, Mr Pang was already surrounded by his wife and two daughters, close relatives and friends.

With MWS facilitating, each person in the room took time to express their love and thanks to Mr Pang for his selfless giving over the years. The sombre atmosphere was tinged with quiet joy as everyone sang and prayed together.

A day later, Mr Pang passed on peacefully. “The well-trained and experienced MWS team helped my late Dad prepare himself spiritually. Death is the entrance to life with God. We felt deeply comforted at being able to express our feelings to Dad, and to celebrate his wonderful life before he passed,” said Ruth, Mr Pang’s daughter.

The well-trained and experienced MWS team helped my late dad prepare himself spiritually.

BEHIND PALLIATIVE CARE

The essence of palliative care is about providing quality of life for patients with life-threatening illnesses, as well as support for their caregivers. It deals with pain management, medical and nursing care dispensed sensitively to ensure that patients are as comfortable as possible in their last days.

In addition to the circle of care which includes therapy, counselling and case management for patients, their families and loved ones are also supported through caregiver training and bereavement. Much less talked about though is the area of psychosocial and spiritual wellness. This may involve facilitating closure, and mediating between family members to ensure patients leave in peace.

LISTENING TO THE TERMINALLY ILL

In 2014, a survey commissioned by Lien Foundation1 to examine death attitudes and preferences in Singapore found that only 50% of Singaporeans had any understanding or awareness of palliative care.

Among those who claimed to be aware, most understood it to be about caring for the dying (42%), providing pain relief (66%) and offering medical treatment (70%) but only 15% related palliative care to psychological wellness.

In reality, faced with dying, the need to find meaning in suffering, to restore peace and gain mental strength becomes even greater and stronger. A US research study2 conducted among 248 ethnically diverse, urban cancer patients, found that patients wanted help most in overcoming fears (51%), finding hope (42%) and meaning in life (40%). 

Dr Gary Pasternak, a US-based palliative care physician and medical director put it aptly, “To be a hospice or palliative care physician is to be a steward of stories. It is to understand the fears and desires of other human beings, guiding narratives to their comforting conclusions. [Palliative care] has to do with narrative, and with story, the nuts and bolts of a life.”

LEAVING A LEGACY

Tackling the emotional, psychological and spiritual wellness of patients, by listening to their stories is hence as
critical as managing physical pain and symptoms. Zann shared a poignant story of how a home hospice patient had talked about her passion in cooking during a home visit. “I offered to document and compile her favourite Hakka recipes for Chinese-style pig trotters and yong tau foo (stuffed tofu) so she can pass it on as a legacy to her children. When her family received the recipe book, they realised these were more than a set of cooking instructions. It was a tangible reminder of their mother’s love and pride.”

CULTURAL DIFFERENCES

In conversations with patients from different cultural backgrounds, researchers found that values and attitudes affected their feelings, concerns and decision making about end of life. The survey by Lien Foundation on death attitudes in Singapore found that Singaporeans’ top priorities focused around their families.
These included not being a financial burden to family members (87%) and having loved ones close by (78%).

Conversely, a US study3 with the family members of hospice patients revealed that the patients’ wishes were more individual-centred. These included fulfilling the desire to travel (79%) and accomplishing a personal goal (78%). MWS medical social work team working with patients affirmed that family is their prime concern; some are worried about leaving behind children, particularly those who are still single.

“Many of our patients share hopes of seeing their children or grand-children getting married and settling down,”
shared Zann. In addition, many shared their wish to die in the familiarity of their own home, reflecting their attachment to ‘family’.

RECONCILIATION AND RESTORATION

Asian families tend to be more reticent and not express their feelings openly. Palliative care professionals can intervene for family members who find it hard to show their appreciation and love, and reconcile past differences.

Wei Leng, the niece of Mdm Tan Sai Tin – one of MWS’ former patients – experienced this first-hand at a bedside intervention arranged for family members of Mdm Tan. During this meeting which was to be the last, the family mended their diferences, expressed love for one another and asked for mutual forgiveness. “As an Asian family, we aren’t used to expressing our love for our aunt,” said Wei Leng. “The bedside  closure benefitted my family tremendously and I hope more families will  experience this too, because it was really, really special to us”.

Authentic dialogue on life and death is another way to evoke empathy and compassion between patients and their caregivers. This helps restore the person’s psychosocial well-being with family and friends. As a senior staff nurse with MWS Home Hospice, Melissa Fong understands this well. She recalled an elderly patient who seemed indifferent about her impending death. However this changed when she received a birthday card from her granddaughter. The card moved her so deeply that she decided to write cards to those who mattered to her. These important last words were both healing for her and her loved ones. 

NAVIGATING DIFFICULT CONVERSATIONS USING THE SPIKES PROTOCOL

Managing dificult dialogues and touchy issues is a key aspect of palliative care. MWS Home Hospice adopts
the SPIKES protocol in presenting distressing information to patients and their families in a systematic manner.
Staff are trained to deliver the bad news clearly, honestly and sensitively so that patients feel understood and supported.

MWS Philosophy of Care: Family Nursing Model

FAMILY AS THE FOUNDATION OF CARE

Centering eldercare and palliative care on ‘family’ is one of the key tenets of the MWS care model. MWS Nursing Homes’ Philosophy of Care is based on the Family Nursing Model, characterised by the following features:
• Every resident is a member of the ‘family’ unit housed in their own space and residence;
• Each MWS staff is assigned to care for a specific ‘family’;
• The resident’s next-of-kin is also part of the ‘family’ unit.

The MWS Philosophy of Care focuses on improving quality of life by practising 3 principles:
Resident-directed – this means recognising individual needs and preferences
Holistic & integrated care
Communal belonging

Each resident has an Individual Care Plan that reflects his or her personal choices, including when they have their meals, the clothes they wear and activities that they want to participate in. There are also opportunities for residents to interact in home-like spaces.

EVALUATING PSYCHOLOGICAL HEALTH OF PATIENTS

The MWS Home Hospice team conducts a holistic assessment of patients that includes asking for their preferences in their care and the support system at home. Apart from medical history, staff also track the patient’s mental state and mood, social history and preparation for death, e.g. whether they have discussed about his funeral. This assessment is done at the first visit and reviewed every 6 months. MWS Home Hospice also uses the Edmonton Symptom Assessment System (ESAS) to measure the severity of pain which has a bearing on feelings of depression, anxiety and overall wellbeing.

A similar ‘Complete Geriatric Assessment’ is done in MWS Home Care to document depression tendencies in clients (using the Even Briefer Assessment Scale for Depression), and caregiver’s burden (using the Zarit Burden Interview or ZBI). Caregiver’s burden refers to the perceived impact of providing care on the caregiver’s own physical and emotional health, social life, financial situation and interpersonal relationships.

Recent ZBI results revealed that among caregivers who felt moderate to severe burden, 68.5% of them experienced marked improvement 6 months after they received intervention from the MWS team. This means that these caregivers feel less stressed because the perceived care burden is no longer as severe.

FINAL WORDS ON SPIRITUAL CARE

How does spiritual care help terminally ill patients?

MWS Assistant Chaplain, Chua Chiew Poh shared some insights. “Some patients may be declining physically but we see improvements in them spiritually and emotionally. Others suffer from degenerative illness that are incurable, yet became more resilient. Through the songs that we play for them, prayer support and recounting the blessings in their life, patients sometimes rediscover new meaning upon reflection. Despite the physical pain and suffering, some of them radiate peace and in certain cases, joy as well. Spiritual care and love are what complete palliative care.”

Much of the existing research on spirituality and palliative care had been conducted in the West. We need more investigations in Asian countries where different cultures and religions are likely to play an integral part.

Spiritual intervention should not be presumptuous to give a dying patient a sense of hope. During the last days and moments, the patient is in all likelihood thinking about the meaning and value of life.

The role of the palliative care team is to encourage spiritual stirring, and not administer it. 

Holistic Palliative Care requires a Multidisciplinary Team

A palliative care team faces multiple and intense demands on a daily basis. Apart from medical and nursing care, meeting the psychosocial and spiritual needs of patients is equally gruelling. It is important therefore to assemble a team with varied competencies and skills. Doctors, nurses, social workers, occupational and physiotherapists, senior care associates and chaplains work together to provide a full suite of care. This whole person approach to palliative care underpins the MWS mission in providing integrated and holistic care in empowering all our beneficiaries to achieve life to the full.

As Zann, MWS Medical Social Worker, summarised, “We often get the patient to talk about what the illness means to him, and to understand this from a spiritual point of view. Our role is to help him achieve an enhanced sense of purpose or meaning. For most patients, the opportunity to share these is therapy in itself.”

References

1. Lien Foundation. (2014). Survey on Death Attitudes. Retrieved from http://lienfoundation.org/sites/default/files/Gen%20Pop%20Findings%20Report%20-%20Full%20REPORT%20%28Website%29_0.pdf
2. Moadel, A., Morgan, C., Fatone, A., Grennan, J., Carter, J., Larufa, G., Skummy, A., Dutcher, J. (1999). Seeking meaning and hope: self-reported spiritual and existential needs among an ethnically-diverse cancer patient population. Psycho-Oncology, 8(5), 378–385. https://doi.org/10.1002/(sici)1099-
1611(199909/10)8:5%3c378::aid-pon406%3e3.0.co;2-a3 Periyakoil, V. S., Neri, E., & Kraemer, H. (2018).
3. Common Items on a Bucket List. Journal of palliative medicine, 21(5), 652–658. https://doi.org/10.1089/
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