Summary

Good death results from good pain and symptom management, achieving a sense of control, preparation for death, settling unfinished business, continued contribution to others, relieving the burden to family members and strengthening relationship with loved ones. Confusion between the sick role and the dying role may result in frustrations in both patients and carers. Hospice care programs integrate physical, psychosocial and spiritual care of patients to meet the needs of dying people. A paradigm shift from the biomedical model to the bio-psychospiritual approach facilitates good dying by shifting the focus from cure to care, and from the doctor-patient relationship to the basic human relationship. 'Being' with the patient as ordinary persons results in feelings of warmth and love in both the doctor and the patient. 'Being', however, exposes the doctor to the patient's pain. By placing an emphasis on staff support and getting in touch with one's psychospiritual issues, the bio-psychospiritual paradigm facilitates growth of the doctor amidst the pain of death and dying, and hospice work becomes a source of fulfillment and self-actualisation.

摘要

理想的臨終過程包括對疼痛和症狀的控制，對事 物仍有主動控制能力，對死亡做好準備、安排未完成的事情、繼續為他人作貢獻、減除家人的負擔以及加 強同親友的情感聯繫等。病人和臨終者的角色時有混淆，會給病人和照顧者帶來困惑。善終關懷將病人的 身體、心理、社會和精神照顧整合在一起，以滿足臨終病人的需要。從生物醫學模式向生物 — 心理精神模式轉變，即，將重點從治癒向照顧、從醫生 — 病人的聯繫向人之基本關係轉變，能幫助病人更好地度 過臨終期。以普通人的身份跟病人相處，給醫患雙方都帶來一種溫暖和充滿愛的感受。然而，同病人“相 處”也會使醫生感受到病人的痛苦。通過同事間的相互支持、關注醫生自己的心理精神需要，生物 — 心理精神模式幫助醫生在死亡和臨終的現象中成長；善終關懷亦成為助人自我滿足和自我實現的途徑。

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Introduction

The first hospices for the care of the dying were founded in the 19th Century in Lyons, Dublin and London. The modern hospice approach started in 1967 in St Christopher's Hospice in London. In 1975, a palliative care service was established in the Royal Victoria Hospital in Montreal.¹ In Hong Kong, the hospice movement started in 1982 and the specialty of palliative medicine was established in 1998. Today, hospices or palliative care services are found in almost every Western country, providing total care to patients who have incurable illnesses.² It aims to palliate anxiety and depression to maintain independence and comfort as long as possible, to control symptoms and facilitate a dignified death, and to continue support in bereavement.³

To help dying people to achieve a good death and the workers to cope with the stress of their work, hospice care involves a paradigm shift from the biomedical model to the bio-psychospiritual approach,^4,5 whatever the setting in which the care is provided, be it an in-patient unit, a home care program or a consultative team in a general hospital.

Good death

Components of good dying include maintenance of comfort achieved through good pain and symptom management.^6,7 Most seriously ill or elderly patients prefer a treatment plan that focuses on comfort,⁸ rather than prolongation of dying. Moreover, dying people often want to retain control and participate in decision making concerning their care. They like to prepare for their own death, settle unfinished business, continue to contribute to others, relieve the burden of family members, and strengthen relationship with loved ones. While they may be seriously disabled, they still demand affirmation by other people as a whole person.^6,7

Locally, when patients with advanced cancer were admitted to a hospice, they also expressed concerns about pain, suffering and loss of independence. They were also concerned about being a burden to others, and expressed a desire to improve their relationship with their loved ones.⁹

Hence, taking care of a dying person is different from looking after a sick person. While sick people wish to get well, dying people gradually relinquish their unrealistic hope for recovery and shift their focus on comfort. While sick people may enjoy temporarily being dependent on others, dying people often strive to be as independent as possible so as to minimise the burden on their families. While sick people enjoy exemption from responsibilities, dying people gradually realise the permanent transfer of their authority to others but would often like to retain a sense of control and continue to contribute to others. Although dying people may never be able to resume their authority and responsibilities, it is understandable that they demand affirmation and continued respect and status. Confusion between the sick role and the dying role can result in inappropriate goal setting, inappropriately aggressive treatment, increasing the burden on care-givers and damage to relationships.¹⁰

Hospice care and the bio-psychospiritual paradigm

Holistic care

To meet the needs of dying patients, hospice care integrates the physical, psychosocial and spiritual care of patients and their families using a multi-disciplinary team approach. Hospices affirm the intrinsic value of man, and therefore the value of their patients, however disabled they are. Hospices affirm life, while regarding dying as a normal phase of life and preparing patients for their death. Hospices facilitate strengthening of relationships between patients and their families, and help patients to settle their unfinished business. To encourage contact with the inner self, flexibility, beauty and serenity are characteristics of hospices.

Empathic opportunities

To provide holistic care to patients, the doctor needs to be aware of the psychosocial and spiritual needs of patients. Patients, however, seldom talk directly of their emotional needs. They often present clues during their conversation with doctors. By responding to and exploring the meaning of these clues, the doctor may gain better understanding of the patient's circumstances and feelings, strengthening the therapeutic relationship, and enhancing the clinical outcome. These are 'empathic opportunities' which the doctor can make use of to improve the doctor-patient relationship. It has, however, been found in an analysis of audiotapes of 116 consultations of primary care physicians and surgeons, that 72% of the empathic opportunities were missed.¹¹

Hospice workers' personal awareness

Doctors may feel uncomfortable in sharing patients' emotions. Is it because of the doctor's own fears and anxiety about illness and death? Do we have personal biases that hinder us from providing psychospiritual care to patients? Are there any unmet personal and emotional needs that affect our patient care? What are our expectations as doctors especially on our own role in providing psychospiritual care? Do these expectations influence our interaction with patients? We need personal awareness of our answers to these questions, before we can provide holistic care to patients.¹²

In the care of the dying, ultimate existential questions that are often asked relate to the purpose and meaning of life. Carers will not be at ease to respond to these questions if they have not thought about the spiritual issues of life, death, hope and meaning beforehand. It will be difficult for them to accompany the patients in the search of their meaning of life. We need to reflect on what we value, what we believe, what gives our life meaning and what we want to cultivate in our relationships, before we can provide spiritual care to patients.¹³

Shift from the bio-medical to the bio-psychospiritual paradigm

While the bio-medical paradigm focuses on cure, hospices focus on comfort and care. While health care services emphasise on holistic care to patients, hospices focus on the self-awareness and spirituality of the carers as well. While patients adopt a sick role in hospitals, hospices facilitate patients to adopt a dying role. In addition to a carer-patient relationship, hospice workers aim to restore the basic human relationship with their patients, in order to accompany them in their last journey. In addition to providing 'doing' care, hospice workers provide 'being' care. 'Doing' care includes symptom management, counselling, rehabilitation, empowerment of patients to look after themselves and to be involved in decision making, empowerment of family members to take care of patients, assistance in establishing and enhancing social relationships, and other tangible assistance such as financial and housing assistance.

'Being' care

To accompany the patients in their last journey, the carer has to 'be with' the patient at a personal level. 'Being with' the patient means that we value them and spend time with them. 'Being' care implies an unconditional acceptance of the person. 'Being' with the patients, we listen to and share with them, and learn from them.⁵ It may not always require conversation, and may not require any word at all.¹⁴ Even without words, it is, however, still a process of giving and receiving resulting in nourishment for both. 'Being' connects the carer with the patient as ordinary persons, resulting in an awareness of mutual closeness and feelings of warmth and love in both the patient and the carer, which may be long-lasting.^15,16 'Being', however, requires the carer to open himself or herself to the patient, and exposes the carer to the patient's pain, despair, anger, suffering and fear.¹⁴ Support of the family and friends and mutual support among the palliative care team is thus a major consideration in hospice care.

Growth of hospice workers

The bio-psychospiritual paradigm benefits not only the patients and their families. It provides a fertile ground for hospice workers to grow. Workers entering the hospice field are often not well prepared for the emotions associated with death and dying. They, therefore, mostly give tangible services to patients and families on an intellectual basis, without in-depth feelings. They try to detach themselves from patients, especially from patients' emotions, and suppress their own emotions. However, their withdrawal will not be able to protect them from the sadness in seeing people suffering and dying. They become frustrated, with guilt feelings of not having done enough for their patients. However, every day they share further pain from their patients, and they become more depressed and anxious. They question their own usefulness, and feel that their work is out of their control. This is a time when the workers decide whether they should continue or quit.

To be able to grow and avoid burn-out, they need to feel supported by the team, to feel that others are doing the same and experiencing the same sadness and frustrations. They need to feel that they are not alone in their work, and the team is working in the same direction with them. They need to have time for self-reflection, and they need to do this in an environment where exploring psycho-spiritual issues is the norm. They need mutual support among colleagues. They may also need counselling sessions, support groups, debriefing and sharing sessions, and self-awareness workshops. Facilities such as quiet rooms, staff common rooms and places for conducting workshops are essential. However, such staff support activities and facilities may be under-utilised, unless there is a well-structured program facilitated by staff support policies, and a culture of mutual support among the staff. Only within such a bio-psychospiritual paradigm can they grow from their experience with death and dying.

Within such bio-psychospiritual paradigm, they gradually can master their fears, anxiety, guilt, grief and depression. They become able to free themselves from their deep-seated emotional concern about their own death and dying. They will not be 'numb' to other people's sufferings, and they do not feel any less concern for their patients. However, they can take hold and let go of the emotions related to their patients and their work. They can get along with and be concerned about their patients with reduced hurt and sense of loss. They can accept illness and death more realistically. They find their work meaningful, and consider hospice work a path to self-actualisation. Their performance in their work is enhanced by their improved self-respect. Deep compassion flows from their hearts to translate into their professional service to patients and their families. They are well adjusted and can cope comfortably with patients' pain and suffering. They meet each day with confidence. They find fulfillment in their work, and look forward to learning and using their own wisdom every day.¹⁷

This applies to all hospice care team members, especially those involved in psychospiritual care. Doctors, being an important member of the team, are exposed to the same working environment as the other hospice workers, and encounter the same psychospiritual issues mentioned above.

Conclusion

In conclusion, dying people often have different needs from sick patients in hospitals. Working with dying people exposes the workers to the pain, anger, fear, sadness and guilt related to death and dying. Hospice care involves a paradigm shift from the biomedical model to the bio-psychospiritual paradigm. The paradigm shift facilitates both the patients and the workers to get in touch with their psychospiritual issues, so as to achieve good dying of the patients, and promote growth of the workers.

Key messages

1. Confusion between the sick role and the dying role may impair the care provided to dying patients and cause frustrations in the carers.
2. A paradigm shift from the biomedical model to the bio-psychospiritual approach is essential in the holistic care of dying patients, and includes 'doing' care and 'being' care, to facilitate patients to find meaning in their last journey.
3. The bio-psychospiritual paradigm not only benefits patients and their families, but also provides a fertile ground for hospice workers to grow.
4. The bio-psychospiritual paradigm includes a culture of mutual support among hospice workers supported by organisational policies, an environment that facilitates self-reflection and getting in touch with own psychospiritual issues, as well as a well-structured staff support programs including counselling sessions, support groups, debriefing and sharing sessions and self-awareness workshops.

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References