What is Palliative Care?
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In this guide, The Live in Care Company takes a closer look at a particular type of live in care called palliative care. This guide will cover important questions you may have about palliative care, such as the stages of palliative care, when end of life care begins, and the difference between palliative care and end of life care.
Discover more about the types of elderly live-in care at home here. For more about palliative care, read on.
What is palliative care?
Palliative care is care, treatment, and support that is provided to someone who has a terminal illness. Terminal illness means an illness that is likely to result in that person dying, such as heart failure, cancer, or dementia, amongst many others. Palliative care can also be provided to those who are frail in their older age and have deteriorating medical conditions. The word palliative means pain relief, so palliative care is focused on easing symptoms and does not just focus on the end of life care. It is important to understand that although there may be no treatment available to stop the progression of the underlying disease, this does not mean that care should be abandoned. Palliative care provides good symptom control, helps with pain relief, and ensures the patient is comfortable. A focus on reducing suffering for not only the patient but also their loved ones is instrumental in the principles for palliative care.
Palliative care takes a holistic approach by integrating physical, psychological, and spiritual aspects of the patient into consideration in order to provide optimal care for the person and their support system, rather than just looking at the disease or illness. Palliative care is about providing comfort care and support in whichever way is needed, whether this is to do with pain relief, psychological distress, spiritual questioning, or provision of social support. The main aim of palliative care is to provide comfort and improve quality of life.
Does my parent need palliative care?
Palliative care provides physical, emotional and spiritual support to someone who has a serious illness or has a terminal diagnosis. This differs to end of life care, where care is offered to those who are expected to die in the coming weeks to months. Palliative care is offered alongside the care you receive from primary doctors. It has less of a medical treatment focus and more of a focus on comfort, pain relief and other symptoms that may cause emotional distress.
Not everyone opts to receive palliative care, but many benefit from the support palliative care provides since it considers more than just physical needs. It can be helpful to sit down with your parent, alongside health practitioners, to discuss whether palliative care is something they feel they would benefit from and whether it is also something you and the wider family may want to be involved with since palliative care often involves helping those in the patient’s life as well.
When should someone be offered palliative care?
Palliative care should be offered to those who have been diagnosed with a life-limiting condition or a chronic illness. This may result in the need for treatment to ease the pain or manage the condition. Palliative care will be offered regardless of whether the condition is curable or not. Palliative live-in care can be offered to those who wish to remain at home rather than in a hospice or hospital. A live-in carer can support with easing pain and improving quality of life.
A live-in carer can help with hospital visits and with accommodating family members to the home. Palliative care can be provided by community palliative nurses but often a live-in carer would have built a relationship with the person, helping them feel more relaxed and comfortable.
When does end of life care begin?
Palliative care can be received at any stage in a life-threatening illness. Some people may benefit from palliative care for many years. Sometimes palliative care is offered alongside treatments such as chemotherapy or radiotherapy.
Palliative care includes caring for people who are nearing the end of life. This part of palliative care is usually called end of life care. Usually, the end of life pathway is for those people who are considered to be likely to die within the next 12 months, although this is not always possible to predict.
Difference between palliative care and end of life care
Palliative care is a type of care that is offered to someone with a life-limiting illness regardless of prognosis. It aims to help with symptom management, such as pain relief and maximising comfort during treatment. It also takes a holistic view to help with any psychological and spiritual support. The aim is to improve the quality of life of the person.
End of life care
End of life care, on the other hand, is usually offered in the last weeks or months of a person’s life. This often takes place in a hospice, but a live-in carer can also be trained to provide end of life care, with support from community nurses. End of life care also focuses on improving spiritual, emotional and physical needs but it is with the knowledge and understanding that death is nearing and therefore treatment for the condition may cease and the focus may rather be on providing comfort during the person’s final moments.
End of life care is a tailored approach for every individual since needs will not be the same for all. Providing high-quality care for those in their final days and hours of life is essential in palliative care and is usually initiated when the patient has symptoms that would indicate their life is ending.
The end of life care pathway involves 6 stages that help guide healthcare practitioners and carers through the palliative care process whilst also considering the patient’s care plan to ensure that their desires are fulfilled.
The stages that constitute the palliative care guidelines include:
- Discussions that take place as the patient’s end of life approaches
- Assessment, care planning, and reviews of the current care being provided. This is continually reviewed as care needs fluctuate.
- Coordination of care from a multi-disciplinary team who each bring expertise from different specialties.
- Delivery of high-quality services in the appropriate environment, whether that be a care home, hospital, hospice, or at home.
- Care in the last days of life may include helping loved ones to process the events around death and to help ensure the patient is in as much comfort as possible. Often spiritual support can be brought in during these times.
- Care after death for matters that proceed after the patient has passed away. This can include bereavement support for loved ones.
Stages of palliative care
There are five stages of palliative that are generally followed, and it can be helpful to see these written out to understand if your loved one may be ready to engage in the process and whether it is something they would like to receive.
This is the initial plan-making stage. It can be a flexible plan and one that is tailored for you and your loved one for their illness. Often you will sit down with other healthcare professionals and outline the plan.
This is quite often the time when an interdisciplinary team made up of lots of different team members from various disciplines, such as pain management, nursing, psychology and spiritual care, will conduct their own assessments and talk to you about the care that they can provide and how they can support with the care plan.
Usually, nurses and doctors will plan to work as closely to your care plan as possible and ensure as much independence as possible is maintained. They may provide certain care duties to help support your loved one at home or with daily activities you are struggling with.
At this stage, care can be moved to a hospital or hospice, if wanted. If you rather stay at home then live-in care can be arranged so that you can stay in the comforts of your own home. Often, end of life care may begin at this point.
Bereavement support and counselling can be provided for family and friends and is often utilised for around a year.
It is important for patients to be involved in decision-making and to have their wishes taken into account. This may not only be around medical decisions but also when thinking about funeral planning, wills and even considering who they want around them during these times. If you have not yet put a power of attorney in place, staff will be able to advise you to do so in case the person approaching the end of their life loses the ability to make decisions for themselves.
Guidelines for delivering palliative care
The key principles of palliative care
There are also 5 core principles that those involved in palliative care follow.
- To relieve pain and other distressing symptoms associated with the disease or its treatment
- To recognize death and dying as a natural process
- To neither prevent nor promote death
- To inform the person’s care through spiritual and psychological principles
- To support the patient so they may continue to live their best life
These principles are followed closely in order to provide a “good death” for someone and their loved ones.
This image can help others better understand how end of life care and terminal care are embedded within the wider field of palliative care. End of life care begins when someone is suspected to have weeks or months to live which then transitions to terminal care which is for the last hours of a person’s life. Some things are included in each circle such as psychosocial support, which means support from loved ones, psychologists, and others within the patient’s social system to enhance wellbeing. Psychosocial support is also extended to loves ones in the terminal care phase to ensure that grieving and bereavement are appropriately addressed and managed. Symptom management is also seen in all circles and is provided by a palliative care team to ensure symptoms are not left unattended which may lead to unnecessary pain and suffering.
Who provides palliative care?
Often palliative care can be provided by a multidisciplinary team, where different people from specialist disciplines work together to coordinate the care of the person with the illness. If someone is receiving the care within their home then their GP can help to organise district nurses to visit the home and also arrange for any additional specialist care that may be appropriate.
The people involved in the palliative care team often include:
The patient: they are considered a member of the team as decisions must be in accordance with their wishes.
The patient’s loved ones: they are also considered members since they are involved in helping the patient feel comfortable and cared for. They can be included in helping to formulate a management plan, as they often know the patient well.
The core team:
- Medical doctor(s)
- Nurses and carers
- Social Worker
- Occupational Therapist
- Chaplain or Pastoral care worker
- Clinical Psychologist
- Music and/or Art Therapist
If a hospice is a preferred choice then additional therapies and rehabilitation may be offered. There are also opportunities to meet other people who are receiving hospice care.
Importance of palliative care for mental health
Palliative care at home can be particularly helpful for your loved one’s mental health. At a time when they may be struggling with their emotional and spiritual wellbeing, they can be surrounded by those that bring them happiness; but it may still feel surprisingly lonely. A hospice and hospital may be a place where care is offered round the clock by numerous professionals, but it is not the same as your own home. This can, naturally, be more difficult emotionally. Palliative home care is often preferred if the person can have the care they require at home.
If someone’s mental wellbeing is suffering, it can be helpful for your loved one to be amongst those that love them and to be around the comforts of their home. If your loved one has suffered from mental illness for quite some time, then there may be additional aspects to consider such as the capacity to make decisions and challenges with treatment.
Palliative care for Dementia Patients
Dementia may present further difficulties with palliative care. A palliative care team should be able to advise you and your loved one on how to manage any difficulties that arise to ensure your loved one is as comfortable as possible. It may be challenging to provide palliative care within the home in certain cases and therefore you may be advised of other options. Nevertheless, palliative care is aimed at supporting a better quality of life which involves improving psychological wellbeing and therefore a palliative care team will be best placed to support your loved one with this wherever they decide they would like to receive their care.
What is the cost of palliative care?
Palliative care provided by the NHS and 3rd sectors such as the Sue Ryder charity and the Macmillan cancer charity are free of charge. Whether there are any costs associated with palliative care will depend on where you choose to be during end of life and the level of care involved.
You can receive end of life care:
- At home
- In a care home
- In a hospital
- In a hospice
Usually, an assessment is carried out to deem which is most suitable.
End of life care at home
You may be able to receive care for free at home if an assessment for NHS continuing healthcare is carried out and you are deemed eligible. Sometimes you might have to pay a bit more than the Government is prepared to fund if you want additional services but usually your needs would have been accurately assessed so this is not necessary. When you start to receive palliative care, a team made up of your GP, community nurses, social care workers and specialists will be the ones visiting you regularly. If you are receiving palliative care at home then your GP will have overall responsibility for your care and for prescription of medication. They can also help arrange you going into hospital or a hospice if needed. If you are keeping your usual home carers on and you normally pay for this care then you will need to continue paying for these carers as before.
Click here to read our guide on adapting to palliative care at home.
End of life care in a care home
If you are already living in a care home then you may already by paying for your care. This will not need to be altered even if you are at the end of life. However, some residential care homes do not have specially trained staff for palliative care. In these cases some people may move to hospital or receive hospice care. This is free of charge and can be delivered in a hospice, at the care home or in your own home.
End of life care in hospital
If you choose to receive end of life care in a hospital then you will be cared for by the healthcare team on the ward. Palliative care teams in hospitals can also monitor discharge plans and arrange for individuals to be transferred to receive palliative care in hospices, care homes or in their own home, if this is later decided.
End of life care in a hospice
If you decide to move to a hospice for end of life care then hospices are free of charge for people with terminal and life-limiting conditions. Charities usually cover these costs through fundraising, community events and charity shops. They may also receive some statutory funding.
Specialist care and general care
In some cases, the level of general care provided may not be adequate to meet the complex needs of the patient. In these cases, a specialist assessment is undertaken which leads to recommendations for care that may be provided in addition to the person’s usual team or it may be carried out by the usual caring team, if they are able to provide these extra needs.
The emphasis of specialty care is holistic care for patients and includes providing psychological assistance, spiritual support, advice and help with managing symptom control, as well as assistance with social and financial issues. As with all palliative care, the focus is on quality of life. Some examples of why specialist care might be helpful are complex symptoms, certain family situations and ethical issues regarding treatment.
The specialist team should usually have input from Physiotherapists, Occupational Therapists, Social Workers, Psychologists, Spiritual practitioners, Dieticians, Speech and Language Therapists, Pharmacists and Specialists in interventional pain management.
How we can help
At The Live in Care Company, we make the procedure of arranging elderly live-in care hassle-free and straightforward especially when you are seeking help for an elderly relative and you are concerned about palliative care. Our team will be happy to speak to you and will take the time to help you to understand your options fully before matching you with a wonderful live-in carer.