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Palliative care at home: what to expect

What to expect with palliative care at home

There are several places someone can receive palliative care for a serious illness, however one of the most popular places to receive this type of care is at home. Here, we are exploring the role of palliative care, the benefits of receiving it at home, who delivers at-home palliative care, and when the right time is to begin. We will also discuss what the day-to-day reality of palliative care looks like, how long it might last, and other elements of palliative care you may need to know about.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 domiciliary 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.

What is palliative care?

Palliative care is a type of care designed for anyone living with a serious illness that is causing them significant pain or symptoms. With the help of a palliative care team, it can manage a person’s symptoms, relieve them of any pain and stress associated with their condition, and work to improve their quality of life. Every year around the world, around 56.8 million people require this type of care, and around 25.7 million are thought to be in the last year of their life. Although anyone with a serious illness may be recommended palliative care – whether they have a terminal illness or not – it is often associated with end-of-life care. This means it may be implemented when someone has been given a terminal diagnosis and is approaching the final months, weeks or days of their life. If you have questions or concerns about the difference between palliative care and end-of-life care, you may find our guide helpful: End Of Life Care vs Palliative CareThe benefits of palliative care include:

  • Pain and symptom management
  • A better understanding of the trajectory of the condition and treatment 
  • Support for families while a loved one is going through a serious illness
  • An increased quality of life for patients – a 2020 study on people with Parkinson’s disease and similar disorders found those who received palliative care scored 3 points higher on their quality of life score than those receiving traditional treatment
  • An increased quality of life for caregivers 
  • Decreased depression – studies have found early palliative care for those diagnosed with advanced cancer led to a lower risk of depression
  • Early palliative care interventions can reduce unnecessary hospital admissions
palliative care at home what to expect

Is palliative care better at home? 

There are several options for where palliative care may be carried out, including a hospice, a hospital, a care home or nursing home, or in a person’s own home. There are several benefits to each of these options. For example, a person who is already receiving care in a nursing home may be more comfortable starting palliative care in the same location rather than moving to a family member’s home. Many people receiving palliative care – including those with a terminal illness – make the decision to remain in the comfort of their own home surrounded by the people they love, their own belongings, and in the environment where they feel most comfortable. In fact, research suggests around 71% of people with a terminal diagnosis prefer to receive care at home rather than in a hospice. Palliative care at home can be equally as effective as the care a person might receive in another location, and may come with additional benefits such as:

  • Making use of and enjoying personal belongings 
  • Having a more positive outlook by being in a comfortable, familiar environment 
  • Receiving more frequent visits from family, friends and other loved ones 
  • Carrying on taking part in hobbies
  • Continuing to get involved in community events (if able) 
  • Enjoying the company of a beloved pet 
  • Remaining in control of their daily schedule
  • Having more autonomy over how the remaining time is spent  
  • Receiving visitors that can provide further psychological and spiritual support during this time, such as therapists, chaplains from the person’s religious organisation (if applicable), and more

You may find helpful information on more general benefits of receiving care at home in our guide: The Benefits Of Home Care vs A Care Home.Receiving palliative care at home may not be possible for everyone. For example, not every symptom will be easily managed outside of a hospital environment, and unique equipment or resources may be required to ensure pain remains limited. If you have questions about whether or not your specific condition (or that of a loved one) can be managed effectively at home, you can discuss this with the GP to ensure you are prepared for the reality of receiving care in this location. As well as pain and symptom management from the doctor or nurse in charge of care, those receiving palliative care at home can also have their additional care needs met by a home care worker. These needs may include things like:

… and more. If you are considering enlisting the help of a home care agency, feel free to reach out to our friendly team to find out how we can support you during this time. 

Who delivers palliative care at home? 

Palliative care at home will be carried out by a team of specialist doctors and nurses who will work alongside the person’s family members and caregivers. The goal of everyone involved will be to ensure they remain as comfortable as possible by managing their pain and making sure they have everything they need. There may also be visits from counsellors, social care staff, physiotherapists, occupational therapists, complementary therapists, and anyone else that could provide additional support. Overall, the person’s GP will oversee all care being administered at home, however typically community nurses will be more present during this time. 

palliative care at home what to expect

When should someone be offered palliative care?

Palliative care will start when the GP in charge of care feels the time is right. Remember, this type of care may be useful at any point during someone’s illness, and is not necessarily used only for those with a terminal condition. In any case, palliative care has been found most effective and beneficial when it is started as early as possible. For this reason, it may begin straight after a diagnosis has been made, particularly if that diagnosis suggests limited time.  Multiple studies have explored the benefits of early implementation of palliative care, and have found a positive correlation. For example, one 2015 study found patients with serious illnesses who were given palliative care ended up living longer than those with similar conditions who were not. Also, a 2023 study supported the idea that starting palliative care early was effective in improving quality of life in patients with cancer, especially for those with advanced cancer.The palliative care team in charge of care will work with the patient, their loved ones and their carers to build and implement a Care Plan that suits everyone involved in the process. The main aims of a Care Plan will be to manage symptoms, ease any pain, and improve quality of life, and this plan can begin as soon as the person’s GP believes it is necessary. 

What does palliative care look like day to day?

The day-to-day realities of receiving palliative care at home depend on the specific condition a person is managing. Palliative care can be relevant for a number of serious illnesses, including cancer, heart disease, chronic respiratory diseases, dementia, and many more. The symptoms associated with each condition and the rate at which they progress means palliative care is never a one-size-fits-all model. Bespoke, person-centred care is crucial during this time, as symptoms and pain must be managed as they progress. Similarly, the type of home care a person receives during palliative care must be personalised to their own situation. For example, if a person has a lot of family members around, they may only require assistance with personal care tasks. Or, if loved ones are rotating their time to help, home care workers may be able to provide companionship during gaps in care, or could offer respite care to give family members a break to recharge. At Home Instead, we focus on providing an entirely personalised experience for every client. While other care options can mean paying for a full package of care that may include unnecessary services, home care with Home Instead enables you to choose the elements of care that benefit you and your loved ones most, and adapt them over time as the situation progresses and needs change. Palliative care can be a difficult and emotional time for people going through it and for their families, so we always aim to be as flexible and understanding as possible while working seamlessly with the medical team in charge of care. No matter the health condition or the outlook, we provide a tailored care experience that puts the person’s needs first and foremost. This might include things like: 

  • Pain management 
  • Medication management
  • Symptom management 
  • Side effect management 
  • Coordinating visits from health professionals and support workers 
  • Emotional support for patients
  • Emotional support for loved ones 
  • Adapting the home to create a safe environment 
  • Improving quality of life with enriching activities 
  • Helping with mobility issues 
  • Detecting additional symptoms and signs of illness progression 
  • Managing weight loss with food preparation 
  • Encouraging regular hydration and consumption of food  
  • Promoting independence by helping to plan activities 
  • Ensuring the patient’s wishes are prioritised

How long does palliative care last?

The length of time a person will receive palliative care depends on the condition they have, how it progresses, and whether or not this eventually becomes end-of-life care. It will typically last until the person’s pain and health has improved, or until they choose to no longer receive palliative care. In cases where people are receiving palliative care for a terminal illness, this has been known to last anywhere from a few days to a few months or over a year. When this type of care progresses to become end-of-life care, studies have suggested this could be shorter. A 2020 review of studies involving more than 11 million patients who were receiving palliative care in the end-of-life phase found that before passing away, the median duration of palliative care was 18.9 days. As is acknowledged in the study, it is important to remember the length of palliative care is greatly influenced by the person’s diagnosis, where their palliative care takes place, and other factors.  There is no obvious answer to the question of when palliative care should begin and end, as medical professionals must use their knowledge and years of experience to determine when this type of care should be utilised. You may find more helpful information in our guide: When Should Someone Be Offered Palliative Care?

What else do I need to know about palliative care?

If you or a loved one expect to receive palliative care, you likely have a lot of questions. There are many things to consider during this time, particularly if a terminal diagnosis has been given. Here are a few resources that may help: 

No matter your situation, our award-winning home care can help support you during this time with the bespoke, person-centred care you need to complement the palliative care process provided by medical professionals. If you would like to learn more about the care we can provide, feel free to reach out to our team to discuss your needs and allow us to create a personalised package to support you. Home Instead is 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.