Essay on Interpretation of ‘Hospice & Palliative Care Centre’ and Definition of Related Terminologies

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Aim

To provide the relief from pain and care for the patients who are at the last stage of cancer, by creating spaces related to activities which a soothing effect on the inhabitants which eventually acts generate as a stress reliever.

Objectives

To analyse the factors that affect human and human psychology health and their influences which improves the quality of life.
To establish the need for an architectural design in healthcare environment.
To study the model centres (case studies).
To study the ideas of design for the current medical environment.
To choose appropriate site accessible and feasible in all respect.
To plan and design a centre where holistic care is given to the patient and their caregiver, as well as making it climate and surrounding responsive.

Scope

Patient-oriented design strategy.

To provide view of the outdoor and cultural elements.

Limitations

The relationship of architecture and human perception is limited to cancer patients who spend a majority of their time in the given frame of an environment.

The centre is limited to patients who suffer from Cancer.

Abstract

The basis of this project thesis is to introduce a new building type that serves terminally ill patients, both adults as well as children, & their family members by creating a building that is designed & prepared to meet their required needs. This thesis aims to interpret ‘Hospice & Palliative Care Centre’ & defines related terminologies in an attempt to examine this type of building in Navi Mumbai particularly in Kharghar. Nowadays several chronic diseases have appeared & the number of dying terminally ill patients is increasing, whereas hospitals are occupied with patients who are not in need for cure, only in need for treatment & conditions management. Hospice & Palliative Care Centre is becoming a global society need to fill some of the gaps that hospitals are no longer able to.

This thesis includes the introduction, definition of related terminologies, project’s background study, need of the project, project’s aim, objectives, scope, and limitations.

It also includes several case studies of Hospice & Palliative Care Canter’s around the world in order to gain a profound understanding of the project. This helps in understanding different planning’s and design strategies used in various Hospices by comparing them.

It includes formation of a design brief, design program of project and its detailed area statement.

It presents criteria of site selection and justification to evaluate a site in Navi Mumbai, to locate the project which will be analysed based upon location, landmarks, climatic conditions & existing challenges.

Hospice

Hospice is a home where the terminally ill patient is offered pain management and relief so as to make them feel comfortable.

Hospice is a concept, a program of care. Whatever its form, the final goal remains the same, to respect the dying and allow them to end their lives in harmony with themselves. Hospice emphasizes palliative rather than curative treatment, quality, rather than quantity of life.

The term Hospice is primarily associated with a particular building or institution that specializes in holistic care and adopts the principles of palliative care. Such institutions provide care mostly in an end of life settings but they may also be available for patients with other palliative care needs. The care also involves assistance for patient’s families to help them cope with what is happening and provide care and support to the patient.

Professional medical care is given, and sophisticated symptom relief is provided. The patient and family are both included in the care plan and emotional, spiritual and practical support is given based on the patient’s wishes and family’s needs.

In a hospice design, there are three type of users –

The patient, the family, and the caregivers.

For the patient, hospice becomes a second home. They enter the facility knowing that they might never leave. For the family, it provides a safe place to spend more quality time with their loved ones. In addition, for the caregivers, it is a place of work, but also where they become like family to their patients; a place where they need to be the strongest ones to help others with their physical and emotional needs. Hospice tries to heal the wounds of the dying not by curing or fixing, but rather a return to balance and re-establishing harmony between body, mind, and spirit.

Unlike an adult hospice where the care provided is comparatively short and at the end of an adult life, a children’s hospice works alongside the family through the months, maybe years of care and beyond until death. At a children’s hospice the whole family can stay if they wish, at repeated intervals.

Hospice is a model for delivery of palliative care for patients at the end of life when curative or life-prolonging therapy is no longer beneficial.

Background study

Dealing with the death of beloved one is challenging experience for surviving family members. Patient with advance cancer have many physical and psychological needs which may long before patient’s death. At last stage of cancer patient is ignored by family and society at times, but the patient needs physical, emotional, spiritual, social needs, distress painless life and their own space.

Origin of a hospice and palliative care centre

By the 1950s, social trends were changing and most people died in hospitals rather than in their own homes. This change reflected the growing number of treatments available in hospitals. The medical profession increasingly saw death as failure.

Since the early 1980s, the need for palliative care for cancer patients has been progressively acknowledged worldwide. More recently, there is increased awareness of the need for palliative care for other chronic diseases or conditions such as HIV/AIDS, congestive heart failure, cerebrovascular disease, neurodegenerative disorders, chronic respiratory diseases, drug-resistant tuberculosis, and diseases of older people. However, there remains a huge unmet need for palliative care for these chronic life-limiting health problems in most parts of the world.

Cancer was the most feared diagnosis. Physical pain afflicted at least three quarters of cancer sufferers and appropriate painkillers were rarely used. Morphine was considered addictive and too dangerous.

‘Hospice’ comes from a Latin word ‘hospitium’, meaning hospitality, and was used in the middle Ages in Europe and Mediterranean regions to describe a place of rest for travellers and pilgrims. Established and run by religious orders, these places offered special hospitality and care to travellers who were far from home and to people who were ill or dying.

The hospice disappeared for a while, but re-emerged in the 19th century in the UK and France particularly, again run by religious orders, and again caring for people who were terminally ill, but also providing accommodation for the incurable and destitute. At that time there was a growing awareness that 20th century medical advances, while offering a cure for many illnesses, also resulted in the health system ignoring those people who could not be cured.

Cicely Saunders, originally a nurse, then a social worker (almoner), finally studied medicine to meet this challenge, the neglect of the suffering of the terminally ill. Her work in building St Christopher’s Hospice and her approach to pain and symptom management, recognizing the multi-dimensional nature of suffering and the need for emotional, psychological and spiritual support for both the terminally ill patient and their family was the foundation for modern hospice and palliative care practice.

The term ‘palliative care’ was first used in 1975 by Canadian surgeon Balfour Mount, an early Cicely Saunders pupil.

Mount developed a comprehensive hospital-based service at the Royal Victoria Hospital, Montreal that included an in-patient ward, consultation service, home care programme, and bereavement support service under the name Palliative Care service by which he meant non-curative therapy aimed at improving the quality of life.

Relation between hospice and palliative care centre

Hospice care and palliative care are very similar when it comes to the most important issue for dying people. Hospice provides “palliative care,” and that palliative care is both a method of administering “comfort” care and increasingly, an administered system of palliative care offered most prevalently by hospitals. Hospice and palliative care protocols call for patients to receive a combined approach where medications, day-to-day care, equipment, bereavement counselling, and symptom treatment are administered through a single program. Where palliative care programs and hospice care programs differ greatly is in the care, location, timing, and eligibility for services.

Difference between hospice and palliative care for adults and children

Paediatric hospice palliative care is based on the same principles as adult hospice palliative care but also recognizes the unique needs of families faced with a child’s illness and death. Children and adolescents are in a process of physical, emotional, cognitive and spiritual development. Depending on their developmental stage, they have different skills and different emotional, physical and development issues/needs.

Children and adolescents communicate differently, and their understanding of illness, death and dying depends on their stage of development. Health care professionals understand that a child’s concepts of illness and dying continue to evolve over time, and develop in association with life and illness experience. Religious/cultural beliefs, patterns of coping, disease experience, previous experience with loss/death, sadness and other emotions associated with grief, all influence a child’s understanding of death.

Children are members of many communities, including families, neighbourhoods and schools and their continuing role in these communities should be incorporated into their dying journey.

Children respond differently to therapies and drugs. They experience unique symptoms, such as fatigue, nausea, vomiting, and shortness of breath, depression and anxiety, which are not well understood. They experience and express pain differently than adults, and require individualized treatment. Children are not as able to advocate for themselves, and often rely on family members to make decisions for them.

Many life-threatening conditions that affect children are rare and only affect children. Many of the illnesses are familiar and may affect more than one child in the family. The diseases are often unpredictable in terms of prognosis, and children may require years of caregiving.

Parents bear a heavy responsibility for the care of their child, which may include making decisions in the best interest of the child at a time when they are highly stressed and grieving the loss of their child’s health as well as dealing with other losses such as financial stability and the loss of time to spend with other children. Families of children who have life threatening conditions tend to be younger and have fewer resources. Their quality of life is significantly improved when the ill child’s quality of life is enhanced.

The grief associated with a child’s death has devastating, long-term implications for the entire family. Siblings have unique needs during and after a child’s death.

Project justification

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Palliative care seeks to enhance quality of life. It also positively influences the course of an illness and when applied early during the course of an illness may prolong life. It is active total care which works best in conjunction with other therapies such as chemotherapy or radiation therapy which often have distressing side-effects. Empathetic communication and psychosocial counselling are an integral part of it.

The aging of the population, success of high technology medicine at prolonging the lives of those who remain seriously ill, and the increasingly fragmented medical system make it difficult for clinicians to provide the full range of services required by patients with serious illness and their families .A multicentre study of over 9000 seriously ill patients found that pain, anxiety, and depression were common and distressing symptoms among seriously ill patients.

In summary, palliative care:

Provides relief from pain and other distressing symptoms;
Affirms life and regards dying as a normal process;
Neither to hastens nor postpones death;
Integrates the psychological and spiritual aspects of patient care;
Offers a support system to help patients live as actively as possible until death;
Offers a support system to help the family cope during the patients’ illness and in their own bereavement;
Uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated

Palliative care is considered as 4th level of treatment by WHO

Prevention
Early Detection
Treatment
Palliative Care
Prevention
Early Detection
Treatment

Palliative Care

It was first introduced as end-of-life care. But now WHO suggests including palliative care in the early stages of treatment to meet the early psychological, social and spiritual needs of cancer patients.

Currently, Hospice and Palliative Care Centres in India is facing a lot of problems:

Lack of awareness in public which creates delays in bringing patients to palliative care units.
Disease acceptance problem for patient and family.
Imitate on western models of care.
Transportation difficulties.
The communication gap between the Hospitals, NGOs and Volunteers.

In India, it is estimated that there are 2 to 2.5 million cancer patients with about 0.7 million new cases coming every year and nearly half die each year. More than 60% of these affected patients are in the prime of their life between the ages of 35 and 65 years. The World Health Organisation has said that there could be 50 million new cancer patients by 2020.

Figure 1.3 STYLEREF 1 s Error! No text of specified style in document. SEQ Figure * alphabetic s 1 a Rate of Cancer

Figure 1.3 STYLEREF 1 s Error! No text of specified style in document. SEQ Figure * alphabetic s 1 b Rate of Cancer Patients(Source:- Google Image)

Figure 1.3 STYLEREF 1 s Error! No text of specified style in document. SEQ Figure * alphabetic s 1 c Incident Rate of Cancer Patients in India

Figure 1.3 STYLEREF 1 s Error! No text of specified style in document. SEQ Figure * alphabetic s 1 d Mortality Rate of Cancer Patients in IndiaCancer Statistics in India 2018

Estimated number of people living with the disease: around 2.25 million

Every year, new cancer patients registered: Over 11,57,294 lakhs

Cancer-related deaths: 7,84,821

Risk of developing cancer before the age of 75 years

Male: 9.81%

Female: 9.42%

One woman dies of cervical cancer every 8 minutes in India.

For every 2 women newly diagnosed with breast cancer, one woman dies of it in India.

Mortality due to tobacco use in India is estimated at upwards of 3500 persons every day.

Tobacco (smoked and smokeless) use accounted for 3,17,928 deaths (approx.) in men and women in 2018.

Total deaths due to cancer in 2018

Total: 7,84,821

Men: 4,13,519Women: 3,71,302

Risk of dying from cancer before the age of 75 years is 7.34% in males and 6.28% in females.

Cancers of oral cavity and lungs account for over 25% of cancer deaths in males and cancer of breast and oral cavity account for 25% cancers in females

Advantages and Disadvantages of Hospice and Palliative Care Centre (Source Author)

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