What is palliative care?

Palliative care at Home Instead

For those living with a serious illness, palliative care is incredibly important. Understanding what this type of care is used for and what you may encounter during the process can help you to plan ahead for yourself or a loved one. Here, we are exploring palliative care, what it does, the different types available, how to talk about it without fear, how long it could last, and more. At Home Instead, our aim is to help people age positively and in place by bringing expert care to their home. For nearly 20 years, we have been providing the highest standard of care, and creating industry-leading training programmes for our Care Professionals that are accredited by nursing and medical professionals. Today, we are the world’s largest global home care network, supporting over 100,000 older adults with personalised, tailored care at home. So whatever questions you have about palliative care, we can help. 

Is palliative care still provided for those with a terminal illness?

Yes. In many cases this type of care is used for those with a condition that is likely to lead to their eventual passing, such as cancer or dementia. When this is the case, palliative care is used to make the person as comfortable as possible, relieve any pain, and support them physically and emotionally during the final months, weeks or days of their life. For those who have a terminal illness, there are usually 5 stages of palliative care:

1. A personalised Care Plan will be created 
2. Emotional support will be provided to help the person come to terms with their diagnosis 
3. Early-stage support will be provided to help keep the person as independent as possible 
4. End-of-life care will begin to ensure the person feels as comfortable as possible 
5. Loved ones will be supported during and after the person has passed 

You can read more about the 5 stages of palliative care in our guide to The 5 Stages Of Palliative Care

Why is palliative care important? 

For pain relief, palliative care is incredibly important, but there are other benefits for those with a serious illness. For example: 

• It can help people with a serious illness to survive for longer.
• It can help to manage their symptoms, including their pain.
• It can improve their overall quality of life so they can enjoy their time more. A 2020 study on people with Parkinson’s disease and similar disorders found that those who received palliative care scored 3 points higher on their quality of life score than those who received traditional treatment.
• It can help people feel more at ease when making decisions about their care.
• It can help to reduce the risk of depression in those with a serious illness. Studies have found early palliative care for those diagnosed with advanced cancer led to a lower risk of depression. 
• It can help provide additional support to families finding it difficult to watch a loved one go through a serious illness.

You will find more benefits specific to those with dementia in our guide: The Benefits Of Palliative Care For Dementia

What types of palliative care are there? 

There are several different types of palliative care available, and all may be carried out in different locations depending on where the person intends to have their care administered. The first thing to decide is whether your loved one will have palliative care take place in a hospice, hospital, care home/nursing home, or in their own home. 

Palliative care in a hospice

Hospice care is a type of care designed for people who have a terminal illness or whose condition is likely to result in them eventually passing away. Although this type of care is not location-dependent, there are specific hospice centres that are similar to care homes, but designed for this type of care. They are usually well equipped with the staff, professionals and resources required to ensure the person feels pain-free and comfortable as they approach the end of their life. Hospices are sometimes a preferred choice for people with a terminal illness as they bring benefits such as specially trained staff and medical professionals, additional support for caregivers, and in some cases they could limit unwanted hospitalisations, treatments and procedures.

Palliative care in hospital

Palliative care can take place in a hospital, and for patients already receiving care there, it may become necessary that they start to receive palliative care there too. This could be because a patient cannot or does not want to be moved in their current condition due to pain, discomfort or other factors. While most people prefer to get out of hospital and back to the comfort of their own environment, a hospital setting may be unavoidable for someone with a serious illness requiring palliative care. On the other hand, some people prefer to be in hospital as they feel at ease surrounded by equipment and staff that can help to improve their condition and make them feel safe.

Palliative care in a care home or nursing home

If someone is already receiving care in a care home or nursing home, they may choose to receive palliative care here too in order to minimise disruption to their routine and remain in the same place. Care homes and nursing homes are often staffed with the relevant professionals who can administer this type of care, or an external medical professional may be brought in to help with this. 

Palliative care in a person’s own home

Often, people with a terminal illness will make the decision to stay at home with the people they love, in the home they know, in order to receive palliative care. Research suggests 71% of people prefer this domiciliary care option over a hospice. Palliative care at home can be just as effective as receiving the same kind of care elsewhere, and can be beneficial for the person’s mental health. This also allows them to carry on with elements of their own life if they are able, such as seeing family and friends, taking part in hobbies, and having more control over their daily schedule. You can read more in our guides: The Benefits Of Home Care vs A Care Home and Palliative Care At Home: What To ExpectAs well as the location of palliative care, there are three different types to be aware of. These are; physical care, psychological care, and spiritual care. 

Physical forms of palliative care

When managing the physical side of palliative care, medical professionals will focus on symptom relief, pain relief, and any type of care that can help alleviate the physical stress someone may be experiencing while managing a serious illness. This might look like managing someone’s nausea, helping with fatigue symptoms, making it easier for someone to swallow food or breathe easily, administering pain relief medication, or offering other options for relieving pain associated with their condition. 

Psychological forms for palliative care

The psychological elements of palliative care involve relieving the stress that often comes with a serious illness. By addressing the psychological aspects of a person’s situation, their quality of life can be greatly improved and their family can experience the benefits of this too. Emotional support is an important part of this type of palliative care, as medical professionals should look to put the person’s mind at ease as much as possible in order to help manage their stress. This could look like providing advice on coping skills, stress management techniques, or if palliative care is required due to a terminal illness, they may require emotional support as they attempt to find a meaning for their experience and come to terms with the end of their life. 

Spiritual forms of palliative care 

Alongside physical and psychological types of palliative care, there is also a spiritual element that must be considered. For those who are approaching the end of their life, spirituality can be an important aspect of care that should not be ignored. People may wish to explore their faith, and caregivers should respect this. Arranging things like prayer, visits from clergy, meditations, spiritual guidance, or supporting the person’s exploration of religious texts are all part of the support given during palliative care. Whether or not religion is involved, people undergoing palliative care may desire to connect in a spiritual way in order to further understand the reasons for their experience. Whatever the person feels they need should be arranged. 

Why is palliative care such a tricky topic to discuss?

Due to its association with the end of life, it is often difficult to discuss palliative care openly as it can be frightening for those who do not understand it or who associate it with their imminent passing. Whether or not a person is dealing with a terminal illness, it should always be stressed that palliative care does not mean the same thing as end-of-life care. When discussing palliative care, the person who is to receive this should be made aware that the focus is on helping them feel more comfortable and pain free in order to improve their quality of life, however long this may be.  Here are some tips for communicating with someone who is receiving (or will receive) palliative care:

• Avoid assuming they do not know anything about their condition. Find out how much they already know and try to acknowledge this before you offer new information.
• Have important discussions in quiet places where you can be properly heard and understood, and where the person can have peace to digest the information. 
• Always explain why you are there. Remember the person may be seeing a lot of different medical professionals, nurses and carers, so identify yourself and make sure the person understands what you will be doing before you begin.
• If you are a carer or medical professional looking after someone receiving palliative care, take time to establish a relationship with the person’s loved ones to make it easier to share information with them.
• Never assume who they would like to be with them during this time. Although family may be the obvious answer, sometimes people do not want certain family members around, so the person in charge of their care should respect this. 
• Explore how the person undergoing palliative care prefers to communicate, and respect this choice. For example, if they have cognitive issues or memory problems they may need to be reminded of details more than once, so always check what they know and understand. 
• Try not to overwhelm the person with information all at once, and use visual diagrams or written communications if you think they will help the person to better understand their condition. 
• Ask open-ended questions like “How are you feeling?” to encourage more communication and exploration of their current state. Asking “Are you feeling better today?” might establish a ‘yes’ answer, but could limit the information you receive. 
• Use plain language without being condescending to the person receiving care, and be as sensitive as you can while remaining clear on what you mean. For example, it may feel more appropriate to say “passing away” to someone with a terminal illness, but if you feel that saying the word “dying” is clearer for the person then try to be direct about this. 
• Be aware of the person’s body language as well as what they tell you verbally, as this can communicate more about how they are feeling and the symptoms they have. 
• Practise active listening and make sure the person feels heard. You may be focused on what the next part of their palliative care should be, but if they tell you new information about their symptoms or pain it is important to listen to this, acknowledge how they feel, and pivot the care to address their needs. 
• Always check you have understood what they are telling you by confirming anything that you deduce from the conversation. Sometimes people in a lot of pain may struggle to communicate, so it is important to ask for them to repeat themselves if you cannot hear or do not understand them. Also you should always give them the chance to correct you if you have misunderstood their needs. 
• Don’t be afraid of silence. This can feel uncomfortable if you are speaking with someone in a lot of pain or who is coming to terms with their mortality, but research has found silence to be an important part of the process as it enables people to better understand information, manage their emotional state, process and reflect on their situation, and respond to information they are given. 
• It is vital to listen to and respond to any concerns from other loved ones, but always remember the wishes of the person receiving palliative care should remain priority.

Alongside discussing palliative care, there may be other important topics to bring up with a loved one, such as Making AnAdvance Statement For Care, arranging a Health And Welfare Power Of Attorney, and the process of Making An Advance Decision To Refuse Treatment: A Living Will. 

How long does palliative care last?

As mentioned, palliative care is different to end-of-life care, which tends to last for a shorter amount of time depending on the condition the person has. As palliative care is mainly about managing pain, this type of care can last for a long time, either until the person’s pain has improved or until they wish to no longer receive palliative care. For those receiving palliative care due to a terminal illness, this care could last just a few days or it could last several months or over a year. One 2020 review of studies involving over 11 million patients receiving palliative care during the end-of-life stage found that prior to passing away, the median duration of palliative care was 18.9 days. However, it was acknowledged that the length of palliative care is influenced by the diagnosis, where palliative care is taking place, which country the patient lives in, and other factors.  It can be difficult to determine when palliative care should start and end, or when end-of-life care becomes a priority if applicable. You may find additional information in our guide: When Should Someone Be Offered Palliative Care?If you are currently looking to put home-based palliative care in place for a loved one, our award-winning home care at Home Instead could offer you the bespoke, person-centred care you need to complement the palliative care process provided by medical professionals. Arranging this for your loved one shouldn’t be a stressful experience, so if this is something you are interested in, get in touch with your local care team at Home Instead to discuss your needs and allow us to create a personalised package to support you.We’re an award-winning home care provider and part of a worldwide organisation devoted to providing the highest-quality relationship-led care for older people in their own homes. Arranging care for yourself or your loved one shouldn’t be stressful, so whatever questions you would like answered, feel free to reach out to the Home Instead team to discuss your needs.