Palliative approach to caring for older people

As modern healthcare has been successful in keeping more people alive, with illness, for longer, the nature of hospitalisation is shifting from cure to care, including managing the end of life. There are more older people in our population; people are living longer; and more people are living with chronic disease, dementia and increasing frailty.

Many people experience disease that results in increased disability often with recurrent hospital admissions and progressive decline over time. Our role is to highlight increasing chronic disease, to shift our focus from prolonging life to maximising quality of life and providing appropriate care to patients and their families.

Palliative care is an approach that improves the quality of life of patients and their families with life-threatening illnesses through the prevention of suffering including physical, psychological and spiritual suffering.

A palliative approach to care is relevant and will benefit any older person who has an illness or condition that is likely to affect how long they will live or if they are becoming frail.

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.'^1.

Palliative care is not just for when the person is dying or at the end of their life; it is for any time during a terminal illness. 'Palliative care:

• provides relief from pain and other distressing symptoms
• affirms life and regards dying as a normal process
• intends neither to hasten or postpone 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 patient’s illness and in their own bereavement
• uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
• will enhance quality of life, and may also positively influence the course of illness
• is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.'¹

Palliative care and ageing

People and their families with the following conditions may benefit from palliative care.

• Progressive dementia
• People dying as a result of the ageing process
• Advanced heart disease
• Advanced respiratory disease
• End-stage renal failure
• End-stage liver disease
• Secondary cancers
• Degenerative neurological conditions

Specialist palliative care is care provided by those who have undergone specific training and/or accreditation in palliative care/medicine working in the context of an expert interdisciplinary team of palliative care health professionals and the designated service system funded to deliver palliative care.² These services support people with life limiting illness in a number of ways, including:

• direct care for people requiring specialist palliative care interventions for management of complex symptoms/care needs
• consultation and advice to other services and health care teams providing end of life care
• education and training on palliative care and end of life issues
• undertaking and disseminating research about caring for the dying and their families/carers.

Not everyone with a life limiting illness will require access to specialist palliative care. In many instances, the most valuable role specialist palliative care can play is to support other healthcare teams and professionals to provide end of life care to their patients.

All patients with a life limiting illness and their families and carers will require support and care from health professionals who understand and are skilled in the palliative approach to care.

A palliative approach to care incorporates an holistic approach that considers and meets all aspects of the person’s and their families, physical, emotional, spiritual and psychosocial needs.

A palliative approach to care emphasises comfort and quality of life and involves a team approach to care.

A palliative approach to care also considers some of the challenges for older people as they near the end of life:

• loss of independence
• having to rely more on others for assistance
• losing control of their life
• not being able to think as clearly as they used to
• changes in physical appearance and functional abilities
• depression/anxiety
• increased social isolation and/or feelings of loneliness
• not feeling valued
• feeling a sense of being a burden to others
• not being treated with respect or understanding.

Responding to the need for palliative care

Communication

When we have identified that a patient needs palliative care, we should introduce the approach to the patient, and to their family and carers, in a clear and sensitive way.

When introducing and providing palliative care, good communication is critical.

Communication occurs in many forms with the person, family member and between team members and other care providers. It can be verbal, non-verbal and written.

The key principles of communication are:

• Individualise communication
• Listen
• Check and clarify
• Maintain dignity.

Communication needs to be individualised by considering:

• The person’s culture
• Their emotional state
• The diagnosis
• Current conditions
• Disabilities and impairments such as vision, speech and cognitive impairment.

It also needs to involve family members as appropriate.

Greet the person by name, use eye contact and position yourself at their eye level.

Consider non-verbal language such as movements, posture, gestures, facial expression and eye contact.

Ask open questions.

Avoid providing lengthy explanations early in your interaction and take time to hear issues from the person’s perspective.

Use facilitative statements such as “tell me about that”.

And maintain a person’s dignity at all times by:

• Greeting the person and calling them by name
• Treating the person as an adult
• Giving them privacy
• Finding out about their earlier life
• Maintaining their comfort.

Develop a care plan

Good communication can facilitate the development of a comprehensive care plan that is both medically sound and has the patient’s wishes and values at the forefront³. If discussions around the preferences for end of life care are prolonged or avoided, patients and their family may have limited opportunity to appropriately prepare for death.

Do not assume

Be curious and do not assume that the patient does not want to discuss their prognosis or end of life care just because they have not raised the issue themselves or because of their cultural or spiritual background. It is also important not to force the patient to have discussions about their prognosis or end of life care.

Check advance care planning

Check if the person has an advance care plan. Advance care plans identifies and documents and individual’s future wishes and preferences based on the values that are important in their life and ensures that end-of-life goals have been established. It also helps establish a plan based on discussions between the person, the family and their care providers and assists them to understand a person’s end-of-life choices.

Palliative care - grief and loss

Our role extends to caring for the person and their family after death. This care can include the following:

• Making the call to the person’s family that they died. This can be daunting, so speak to experienced clinicians about the strategies they find helpful in this situation.
• Preparing the person’s body and cleaning the hospital room to prepare for viewing as soon as possible after death.
• Being aware that personal care after death is best carried out within two to four hours of the person dying; this preserves their appearance, condition and dignity.
• Providing support to the family and friends and giving them the opportunity to participate in the process of preparing the body if they wish to do so.
• Honouring the spiritual and cultural wishes of the older person and their family and friends, for example, having a family member wash and care for the body or ensuring only someone of the same gender washes and cares for the body.
• Preparing the person’s body for transfer to the mortuary, funeral director or other location based on the older person’s and their family’s wishes.
• Using the person’s preferred name and give families some warning of what to expect if they have not been present. This can be as simple as normalising the fact that once a person has died their body can become stiff and a bit cold to touch, but it can be comforting to touch their hair.
• Ensuring privacy, respect and dignity of the deceased person is maintained.
• Honouring people’s wishes for organ and tissue donation.
• Ensuring the safe return of the deceased person’s personal possessions to the relevant family member or friend.
• Providing family and friends with written information about the processes following death, such as what will happen with their body, how to collect the death certificate, the role of the funeral director and bereavement support services. Provide them with the opportunity to ask any questions. Some hospitals have bereavement procedures and provide a follow up phone call to families. Follow your health service procedures.

We should also be mindful that other patients and their families will be aware the person has died and this may raise some emotions for them. It’s best to acknowledge and respond to these concerns.

Grief and loss

Grief is a common and especially significant concern for carers and family members. Reassure family and caregivers that these responses are common and that grieving is the normal response to the death of a loved one. Grief is profound as it affects so many domains of our lives. Early actions can be taken to minimise distress associated with grief.

It can manifest as sadness, anger, fear distress, despair, anxiety, guilt, worrying thoughts, sleep disturbance, social withdrawal and/or decreased ability to maintain an organised lifestyle.

Grief can also trigger feelings of loneliness and social isolation for family and carers. These feelings may be pre-existing but exacerbated by the loss, or caused by the grief if a person withdraws from their usual activities. It is important to ask how they are feeling, acknowledge their feelings and help them to seek appropriate support and engage with others. It is also important to:

• allow a person to talk about their concerns
• offer practical support
• allow for individual responses
• accept strong responses or stoicism
• take time, don’t rush
• encourage family and friends to take time to say goodbye