The 5 stages of Palliative Care
Exploring the 5 stages of Palliative Care
Palliative care may seem frightening to those who have not encountered it before, and as everyone’s condition is different and requires bespoke care, no two experiences of palliative care will be the same. There is, however, a general framework for palliative care that many professionals use to determine the different stages a person and their loved ones may expect to go through. Here, we are exploring the 5 stages of palliative care, how each one works, the things you may need to know or want to ask at each stage, how home care can help to support you or your loved one at each stage of care, who may be involved in the process, 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 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 commonly associated with end-of-life care, but the two are different. While end-of-life care is specific to those nearing the final months, weeks or days of their life, palliative care is designed for anyone living with a serious illness that is causing them pain or uncomfortable symptoms. The aim of this type of care is to ease the person’s pain, symptoms and stress in order to improve their quality of life. A 2020 study on patients with Parkinson’s disease and similar disorders found those who received palliative care scored 3 points higher in their quality of life score than those who received traditional treatment.Anyone of any age can receive palliative care – it is not only offered to those with a terminal illness. However, in the context of the 5 stages of palliative care that we will be discussing below, it is important to know that palliative care may eventually develop into end-of-life care if a person’s situation worsens to the point where no further treatment can be given to cure the condition. You can learn more in our guide: What Is Palliative Care?If you have further questions about the difference between palliative care and end-of-life care, you can read more about this here: End Of Life Care vs Palliative Care.
What are the 5 stages of palliative care?
As an overview, there are 5 stages of palliative care that a person may transition through, and these are often recognised by medical professionals and care teams. They include:
- The creation of a personalised Care Plan
- Emotional support to help the person come to terms with their diagnosis
- Early-stage support to keep the person as independent as possible
- End-of-life care to ensure they remain as pain-free and comfortable as possible
- Support for families during and after their loved one’s passing
If you are wondering when palliative care should begin for you or a loved one, you may find more information in our guide: When Should Someone Be Offered Palliative Care?Each stage of palliative care is designed to provide the ideal support for the person’s current health situation, so there is no set plan for when each stage moves onto the next. Every person’s diagnosis, symptoms and wishes are entirely different, so a bespoke, person-centred approach to palliative care is important.
Stage 1: The creation of a personalised Care Plan
Apersonalised Care Plan is the first step in the palliative care process to ensure that medical professionals, caregivers, loved ones, and of course the patient themselves are all on the same page when it comes to what care should be given. The plan should always be tailored to the person’s health needs, symptom management needs, pain relief needs, emotional needs and personal wishes. Not only will this plan indicate what should be happening now, it will also make contingency plans for when the condition adapts in future. Typically a team of doctors, nurses and other medical professionals will weigh in on this plan to ensure it offers a holistic approach to the person’s care, but if they are receiving care at home, their GP will oversee this. Palliative care plans may cover things like the current treatments the person is undergoing, future plans for treatment as the condition progresses, needs of family members, medications for pain relief and symptom relief, preferences for home care, and more – the aim here is to make the doctor’s recommendations and the patient’s wishes clear for everyone involved to understand and follow. Although it can be difficult to consider these things so early in the process, this is the best time to tackle practical elements of palliative care such as Getting Power Of Attorney For Elderly Parents, creating a Health And Welfare Power Of Attorney, and Making An Advance Statement For Care. It is a good idea to deal with these things early so it does not become too late to gain input from the person who is approaching the end of their life. As the Care Plan is being made, it may be a good time to ask questions like:
- “Who will be involved in my palliative care?”
- “Can I receive palliative care at home?”
- “Should I be thinking about end-of-life care now or is it too early?” You might find more useful information in our guide: What Is An End Of Life Care Plan?
Although it can be a difficult conversation to have at such an early stage, it is also important to consider what should happen in the event that the person chooses to refuse treatment later in the process. You can learn more about what this means and how it might affect you or your loved one in our guide:Making An Advance Decision To Refuse Treatment: A Living WillAt this stage of the palliative care process, home care professionals can help by providing care for whatever the person’s condition requires. Whether specialist care for cancer is required, support for Alzheimer’s or another condition, or just some help around the home to relieve the family of stress during this difficult time, enlisting the help of a caregiver has many benefits.
Stage 2: Providing emotional support
Palliative care is designed to be a holistic approach to care that encompasses physical, psychological and spiritual elements in order to provide the most useful experience to the person receiving it. Before the later stages – and arguably more emotionally challenging stages – of palliative care commence, coming to terms with their illness and managing the psychological difficulties of chronic pain should be explored here in order to help the person manage their feelings. Studies have found early palliative care for those diagnosed with advanced cancer led to a lower risk of depression, so providing emotional support throughout this process can be incredibly beneficial to the person and their family. As is decided in stage 1, the Care Plan will be personalised to the person’s individual needs and wishes, so what this stage of the process looks like is entirely unique for each person. It may include difficult and clarifying conversations with loved ones, exploring the meaning behind pain and the diagnosis, making their desires for the future known, and more. At this stage, it may be useful to consider asking questions like:
- “Are there any support groups to speak to other people in a similar position?”
- “How can I talk about dying with my family?”
- “What can I do now to help my loved ones later?”
Whatever the person’s wishes are for palliative care, they can start to be explored here. For example, they may wish to seek the guidance of a spiritual or religious representative from their faith who can discuss how they are feeling and answer any questions they have about the unknown. If the person is interested in trying complementary therapies, these may also be arranged. This could be things like music therapy, meditation or massage – whatever will help improve quality of life during this time. If they feel it would help, therapies or counselling can also be arranged to help with mental health and emotions during this strange time. While the patient will be given plenty of opportunities to be alone if they wish to process emotions in private, the palliative care team will always be around during this stage to help with anything they would like to talk about, answer any questions, talk about fears or worries, and guide them through the process of discussing a difficult diagnosis with loved ones. This can be a difficult stage of the palliative care process that evokes many emotions and requires families to spend time alone. However, often they feel comforted by having home care professionals visit their loved one’s home. This means the caregivers can take on certain tasks so the family can spend quality time with the person instead of managing these. This could be things like personal care activities (getting washed and dressed), housekeeping, specialist cancer care to support and coordinate medical professionals visiting the home, and more.
Stage 3: Providing early-stage support
Two of the main aims of palliative care are:
- To ensure the person feels comfortable
- To keep them as independent as possible
For many people this means receiving palliative care in the comfort of their own home, and continuing with as many of their usual activities as possible while they are still able. Early-stage support means providing whatever support is needed to facilitate this. In many cases, this could mean adapting a person’s home to include any equipment likely to become necessary, making sure the home is safe for them to move around in, and making everything easy for them to continue living independently. This could include things like grab rails, a walk-in shower, a ramp outside the front door, and more. According to advice from Age UK, older people living in the UK can access the necessary home adaptations by contacting their local council to arrange a Care Needs Assessmentto determine whether they are eligible for certain types of care and support – this can usually be fast-tracked if they have received a terminal diagnosis. If they meet the financial criteria, their local council will likely pay for minor home adaptations that cost less than £1,000. Major home adaptations that require building work can be more expensive, so they may need to apply for a Disabled Facilities Grant (DFG) if this is the case.You can find more useful information in our guide: Home Adaptations For Disabled Older PeopleDuring the early-stage support phase, the following questions could be most helpful:
- “What plans are in place if my symptoms change or become worse?”
- “What are the potential side-effects I am likely to experience from my treatment?”
- “What resources are available for me to make the most of my time?”
Community care nurses could be involved in care at this stage, but regardless of their involvement, home care can be used to support efforts to maintain the person’s typical activities at home.
Stage 4: End-of-life care begins
The aforementioned stages can be relevant and useful for anyone undergoing palliative care who does not have a terminal diagnosis, however for those who do have a life-limiting condition or whose treatment has not been successful, the doctor in charge of their care may at this point discuss beginning end-of-life care.
Any resources and energy that has previously been focused on curing the illness will now be redistributed to prioritise making the person as comfortable as possible, managing their pain so they have the opportunity to die with dignity, and offering further emotional support as they come to terms with their prognosis.
If the person’s Care Plan includes an eventual move to a nursing home or hospice, this will happen in stage 4. If, however, the person has chosen to remain in their own home in the final months, weeks or days of their life, they can do so. Research suggests around 71% of people with a terminal illness make the decision to stay at home to receive palliative care, rather than being moved to a hospice.
You may find more useful information in our guide: Understanding The End Of Life Care Pathway
At this point in the process, if conversations about wills, the person’s end-of-life preferences, and other logistical factors have not yet been discussed, these should be taken into account as soon as possible to avoid the person reaching a stage where they are no longer able to voice their wishes.
It can be helpful to use this time to ask questions such as:
- “What decisions can I make now to make things easier on my loved ones when I pass?”
- “How do I plan and create a will?”
- “What should I expect as I reach stage 5 of the palliative care process?”
Home care may become more vital around this time, and family caregivers can make use of things like respite care to take a break, or live-in care if more help is needed on a day-to-day basis.
It is extremely difficult to know when the final days and hours of someone’s life will be, and in many cases doctors will not be able to accurately predict this. One 2020 review of studies involving more than 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. It was acknowledged, however, that the length of palliative care is often influenced by the health condition, the location and country of the palliative care, and other factors.
Some things that you can usually expect during this time include:
- Drowsiness, a lack of energy, and possibly slipping in and out of consciousness
- No desire to eat, drink or swallow medicine
- Less regular breathing, or noisy breathing
- Confusion, hallucinations, and possibly not recognising people
- Restlessness and an unusual desire to move around
- Cold hands and feet, and a blue tint to skin
Stage 5: Providing support to loved ones
After someone passes away, the final element of palliative care is about providing bereavement support to family members and other loved ones, as well as support to get through the practical steps involved after someone’s passing. This might mean organising or pointing loved ones in the direction of local mental health services that can offer bereavement counselling, giving the family information on funeral directors and the steps involved in this, and carrying out any other final wishes mentioned in the person’s Care Plan. The family should be most involved in these steps, but palliative care workers can help to guide them in the right direction and be on hand to provide further support if needed.
At this time, family members may have questions such as:
- “Who do I contact when my loved one has passed?”
- “How do I organise a funeral?”
- “What local services are there to help me manage my grief?”
Who delivers palliative care at home?
When palliative care is carried out in a person’s own home, it is managed by a team of specialist doctors and nurses working alongside the family members and caregivers to provide a seamless palliative care experience that adheres to the person’s Care Plan.
With the help of counsellors, social care staff, physiotherapists, occupational therapists, complementary therapists, religious groups, charities, and anyone else that could provide additional support, palliative care can be effectively delivered at home in the same way that it can be in a hospital or hospice.
If you are in the process of arranging palliative care, or you have been recommended this by a doctor for yourself or a loved one, implementing home care can be a helpful addition to this process in order to take pressure off of the person and their loved ones during this difficult time, and complement the care provided by the medical team overseeing treatment.
Home Instead offers bespoke, person-centred care, so if this is something you are interested in, you can contact us 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 at any time of life, so whatever questions you would like answered, feel free to reach out to the Home Instead team to discuss your needs.