Palliative care at home: What to expect
Palliative care at home is a compassionate care option we offer to support family members and loved ones affected by terminal illness. We provide private palliative care at home to allow your family to enjoy the time you have together while receiving specialised and personalised care.
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In this guide, The Live in Care Company takes a closer look at this particular type of live-in care. We understand how difficult it can be to manage the serious illness or condition of a loved one, and we will aim to cover important questions you may have about palliative care. Read on for a look into the stages of palliative care, when end-of-life care begins, and the differences between palliative care and end-of-life care.
Unsure of what kind of care you require? Discover the types of live-in care at home we provide here.
What is palliative care?
The word ‘palliative’ is associated with pain relief, soothing, and alleviating discomfort. Likewise, palliative care is focused on easing symptoms and not simply end-of-life care. Palliative care is the treatment and support provided to a person who has a terminal illness or any illness that is likely to result in death, such as heart failure, cancer, or dementia. Palliative care can also be provided to those who are frail in their older age and have deteriorating medical conditions. 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 that the patient is comfortable.
Private palliative care at home
A focus on reducing suffering for not only the patient but also their loved ones is a key principle in palliative care. Private palliative care at home will involve working closely with the family and offering guidance and support during these stages of end-of-life care.
Palliative care takes a holistic approach by taking into consideration the physical, psychological, and spiritual aspects of the patient in order to provide optimal care for each individual and their support system, rather than just looking at the disease or illness. This form of end-of-life care at home is about providing comfort 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.
When should someone be offered palliative care?
Differing slightly from end-of-life care, where care is offered to those who are expected to pass away in the coming weeks to months, palliative care will provide physical, emotional and spiritual support to a parent who has a serious illness or has a terminal diagnosis. Palliative care will be offered alongside the care from primary doctors, and have less of a medical treatment focus and more of a focus on comfort, pain relief, and other symptoms that may cause emotional distress. The ageing process can be difficult for the elderly, as well as their children and family, to accept. It can be hard for parents to discuss a loss of independence and a decline in health with their family, but these are issues are important to understand. Not everyone chooses to receive palliative care, but many benefit from its support since it considers more than 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. You can also discuss whether it’s 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 live in home care?
Palliative care should be offered to those who have been diagnosed with a life-limiting condition or a chronic illness, resulting in the need for treatment to ease pain or manage the condition. A person receiving palliative care may move on to a hospice if their condition progresses, but it is not always required as many can receive palliative care for years.
Palliative care will be offered regardless of whether the condition is curable or not, and palliative live-in home care can be offered to those who will benefit from remaining at home rather than in a care home, hospice or hospital. A live-in carer can support your loved one by easing pain and improving quality of life in a comfortable, safe, and familiar environment. Palliative care can be provided by community palliative nurses, but your loved one may feel more relaxed and comfortable with a single live-in carer with whom they can build a relationship.
Our Live in Company care team will take the time to fully understand your condition, situation, expectations, and any required treatment before matching you with a wonderful and skilled palliative live-in carer to care for your loved one within their home. If the condition is not immediately life-threatening, palliative live-in care can be offered to both the patient and their family. If you would like to discuss care options with a member of our team, please feel free to contact us today.
Importance of palliative care at home
Palliative care at home can be particularly helpful for your loved one’s mental health. Even if your loved one is surrounded by numerous professionals and receives around-the-clock care, such as in a hospice or hospital, they may still feel lonely and struggle with their emotional well-being. Palliative home care is often the preferred choice if your loved one is able to have the care and treatment they require at home.
If someone’s mental well-being 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.
Palliative care for those living with dementia
If your loved one has suffered from mental illness, such as dementia, for quite some time, there may be additional aspects to consider such as the capacity to make decisions and challenges with treatment.
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 dementia cases, and you may be advised of other options. Nevertheless, palliative care is aimed at supporting a better quality of life which involves improving psychological wellbeing. A palliative care team will be best placed to support your loved one with this however they would like to receive their care.
Our specialist dementia care team understand the difficulties that come with dementia and end-of-life care at home. Rest assured that as cognitive problems worsen, your loved one will continue to be supported in a number of different ways by an experienced, qualified, and compassionate carer.
When does end-of-life care begin?
Palliative care can be received at any stage of a life-limiting illness, and some people may benefit from palliative care for many years. For example, palliative care is sometimes 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 pass away within the next 12 months, although this is not always possible to predict.
Difference between palliative care and 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
The end-of-life care pathway involves six6 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 brings expertise from different specialities.
- 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 process the events around death and helping 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.
Guidelines for delivering palliative care
There are also five key principles of palliative care that palliative carers will follow.
- To relieve pain and other distressing symptoms associated with the disease or its treatment
- To recognise 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 ensure the person receiving care and their relatives feel as supported and comfortable as possible during their final months, weeks and days.
Understanding these principles can help others better understand how end-of-life care and terminal care are embedded within the wider field of palliative care. Remember, end-of-life care begins when someone is suspected to have weeks or months to live, and then transitions to terminal care which is for the last hours of a person’s life. Aside from symptom management, psychosocial support is incredibly important at every step of palliative care, which means support from loved ones, psychologists, and others within the patient’s social system. Psychosocial support is also extended to loves ones in the terminal care phase to ensure that grieving and bereavement are appropriately addressed and managed.
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, 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: Patients are considered members 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 will also include:
- Medical doctor
- Nurses and carers
- Social Worker
- Occupational Therapist
- Chaplain or Pastoral care worker
- Clinical Psychologist
- Music and/or Art Therapist
What is the cost of palliative care?
Palliative care provided by the NHS and third 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 the 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 determine which form of end-of-life care is most suitable.
End-of-life care at home
You may be able to receive care for free at home if you complete an assessment for NHS continuing healthcare and you are deemed eligible. You might have to pay a bit more than the Government is prepared to fund, especially if you want additional services. 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 to visit you regularly. If you are receiving palliative care at home, then your GP will have overall responsibility for your care and for the prescription of medication. 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 your home for palliative care.
End-of-life care in a care home
If you are already living in a care home then you may already be paying for your care. This will not need to be altered even if you are at the end of your life. However, some residential care homes do not have specially trained staff for palliative care. In these cases, some people may move to the 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 a patient. In these cases, a specialist assessment is undertaken to recommend care that may be provided in addition to the person’s usual team. This care may also be carried out by the usual caring team if they are able to provide for these extra needs.
As with all palliative care, the focus is on quality of life. Speciality palliative care is holistic 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. Specialist care might be helpful if there are complex symptoms, certain family situations, and ethical issues regarding treatment.
A 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. You may speak to us by calling 0118 427 0297, filling in an enquiry form on our website, or emailing firstname.lastname@example.org.
Palliative live-in care FAQs
How long does palliative care usually last?
Palliative care is correlated to a life-limiting illness, but in no way requires that the patient is close to death. This form of care can last from weeks to years, depending on each individual’s needs.
Can palliative care be curative?
Palliative care is generally not curative but instead geared towards symptom relief. That being said, the patient may get better after and recover after receiving palliative care.
How does palliative care work?
Palliative care works by providing comfort in all the areas where a patient may be suffering, be it physical, medical, emotional, psychological, or spiritual. This may be through practical support, planning for the future, and ensuring overall good quality of life.
What are the benefits of palliative care at home?
One-to-one support from a professional and compassionate palliative live-in carer can make all of the difference. You can benefit from remaining in a comfortable and familiar place, as well as close to your family and loved ones.