Palliative care is a compassionate approach to providing relief from the symptoms and suffering associated with serious, life-limiting illnesses. It focuses not just on the physical aspects of care, but also addresses the emotional, psychological, and spiritual needs of both the patient and their family. The goal is to improve the quality of life for individuals facing terminal conditions, while also supporting their loved ones during this challenging time.
Palliative care is typically divided into five stages, each designed to cater to the evolving needs of the patient as their illness progresses. These stages guide healthcare professionals in providing personalised, comprehensive care that respects the patient’s wishes and enhances their comfort.
Here we’ll discuss each stage of palliative care, highlighting the essential steps involved in ensuring that patients and their families receive the best possible support throughout the journey.
The five stages of palliative care
Palliative care is designed to improve the quality of life for patients with serious illnesses. It focuses on comfort, rather than curative treatment, and involves a team of healthcare professionals.
The five stages of palliative care are:
- Creating a bespoke care plan
A personalised plan is developed to meet the patient’s specific needs, preferences, and goals for care. - Providing emotional, spiritual, and psychological support
The patient and their family receive emotional and psychological support to help cope with the challenges of illness. - Enacting the care plan
The care plan is implemented to manage symptoms, pain, and provide practical assistance with daily tasks. - Transitioning to end-of-life care
As the condition worsens, the focus shifts to providing comfort and dignity during the end-of-life stage. - Supporting family and loved ones
Support is offered to the family, both during the patient’s illness and after their passing, to help with grief and practical matters.
These stages are flexible and adjusted to the individual’s needs, ensuring compassionate care at every step.
Stage 1: Creating a bespoke care plan
The first step in providing palliative care is to create a comprehensive and personalised care plan. This plan is put together by a multidisciplinary team that typically includes healthcare professionals such as the patient’s GP, nurses, occupational therapists, social workers, and palliative care specialists. Together, they will assess your loved one’s physical, emotional, spiritual, and social needs.
During this stage, the team will gather important information, such as the expected progression of the illness, specific symptoms to be managed, and any medical treatments or medications required. This includes pain management strategies and medication to alleviate other symptoms such as nausea, breathlessness, or fatigue. The team will also address practical aspects, such as the preferred location of care – whether at home, in a hospice, or another suitable care facility.
An important aspect of the care plan is respecting the individual’s wishes regarding their care. This may involve discussing and documenting decisions such as whether to receive certain medical treatments, or whether to decline interventions that may extend life without improving quality. The plan will also include home adaptations to improve comfort, such as installing grab handles, ramps, or pressure-relieving mattresses.
In addition, legal decisions may need to be made. Your loved one might choose to set up a Lasting Power of Attorney (LPA) to appoint someone to make health and welfare decisions on their behalf. They may also choose to create an Advance Decision to Refuse Treatment (ADRT) or a ReSPECT form, which outlines their treatment preferences in case of an emergency.
Consulting with a solicitor or healthcare professional during this stage can help ensure that the correct legal documentation is in place to safeguard the patient’s wishes.
Stage 2: Providing emotional, spiritual, and psychological support
Once the care plan is in place, the focus shifts to providing emotional, spiritual, and psychological support. The diagnosis of a life-limiting illness can bring a range of emotions, both for the patient and their family, and it is essential that support is available throughout the journey. This phase ensures that both the patient and their loved ones receive the necessary care to help them cope with the emotional and psychological toll of the illness.
The palliative care team will offer confidential opportunities for the patient and their family to express concerns, fears, or feelings of anxiety. This support can take many forms, such as counselling, spiritual care, and assistance from psychologists or social workers who specialise in supporting families through difficult times. Whether the patient is struggling with fear of the future, depression, or existential concerns, the team can provide the emotional tools to manage these feelings.
Spiritual care may also play an important role, especially for individuals who find comfort in religious practices or have spiritual beliefs they wish to explore. Palliative care teams often include chaplains or spiritual care professionals who can offer guidance and help patients reconcile their beliefs with their experiences. This stage also provides space for families to ask questions about what to expect, easing anxieties about the future and giving them peace of mind regarding their loved one’s care.
Stage 3: Enacting the care plan
Once the care plan has been created, it is time to put it into action. This stage focuses on the implementation of the agreed-upon strategies and ensuring that your loved one receives the appropriate care for their condition. The healthcare team, led by a GP, will be responsible for monitoring symptoms and adjusting treatments as needed, providing both medical and emotional support.
During this phase, your loved one will be monitored for common symptoms such as pain, shortness of breath, difficulty sleeping, or fatigue. Medications are carefully prescribed and adjusted to ensure that symptoms are effectively controlled. Pain management, for instance, may require a combination of medications, including analgesics, and non-pharmacological treatments, such as massage therapy, physical therapy, or relaxation techniques.
If your loved one is receiving care at home, the palliative care team will make regular visits to ensure their comfort and well-being. Caregivers will be trained to manage medications and symptoms and will be provided with the resources and support needed for daily care.
Home-based care also involves practical considerations, such as making modifications to the living environment. If your loved one’s mobility is impaired, adaptations such as ramps, stairlifts, or an adjustable bed may be necessary. Financial support might be available through grants or other assistance programs to help with these adjustments. For example, in England, the Disabled Facilities Grant can cover the cost of home modifications, and funding may also be available for specialised medical equipment.
At this stage, it may also become clear whether home care will continue to meet your loved one’s needs or whether additional services, such as hospice care or a nursing home, should be considered. While home care is often preferred, the medical complexity of the illness may sometimes require a more specialised environment.
Stage 4: Transitioning to end-of-life care
As the illness progresses, the focus of care shifts towards end-of-life support. This stage is marked by a significant change in priorities, as the emphasis moves from curative treatment to ensuring the patient’s comfort and dignity in their final days. The goal is to help the patient pass away peacefully, surrounded by loved ones, and with their wishes respected.
For those who wish to remain at home during this stage, arrangements will be made for the transition, with the palliative care team providing additional support. If the patient is in a hospital or hospice but prefers to pass away at home, transfer plans will be made to facilitate this move. The GP will continue to oversee the patient’s care during this time, ensuring that comfort measures are maintained and that pain and other symptoms are effectively managed.
End-of-life care includes emotional and spiritual support for the patient and family, with the team helping everyone prepare for the inevitable loss. Support might also include making arrangements for funeral care and ensuring that the family is provided with grief counselling, if needed.
Stage 5: Supporting family and loved ones
Caring for a loved one with a terminal illness can take a significant toll on the family and caregivers, both physically and emotionally. At this stage, it’s crucial to provide ongoing support to the family members who have been involved in the care journey. After the patient’s passing, grief support becomes an essential part of the process.
As the primary caregiver, it’s important to prioritise your own health and well-being. Caregiving can be physically and emotionally exhausting, so taking time for self-care is vital. This may include seeking respite care, taking breaks when needed, and engaging in relaxation techniques. Many caregivers feel guilty for taking time for themselves, but this is essential for managing stress and ensuring that you are able to provide the best care possible.
In addition to providing support during the care journey, it is equally important to offer grief counselling after the patient’s death. Hospice and palliative care teams often provide grief support services, such as counselling and support groups, which help families navigate the mourning process. Mental health professionals can also assist with anxiety, depression, or other emotional challenges that may arise.
Family members may also receive help navigating legal matters related to the patient’s passing, such as handling their estate or final wishes.
When does palliative care start?
Palliative care can begin as soon as a life-limiting illness is diagnosed and is not solely reserved for the final stages of life. In fact, early involvement in palliative care can greatly improve the quality of life for both the patient and their family. Palliative care focuses on providing relief from the symptoms of the illness, addressing physical, emotional, and psychological pain, and supporting the patient in making informed decisions about their care.
Starting palliative care early in the illness can help manage symptoms more effectively and make the entire journey more comfortable. While most patients believe palliative care is only for the end of life, it is beneficial to begin care as soon as possible. The goal is not to cure the illness but to provide the best possible quality of life for the remainder of the patient’s life, whatever that may look like.
Palliative care also helps address symptoms unrelated to the terminal illness, such as fatigue, mental health struggles, and emotional distress. It allows families to receive guidance on how best to support their loved ones and prepare for what lies ahead.
Expert palliative care in your own home
For nearly 80 years, we have supported people who require palliative care to enjoy an improved quality of life in their own homes and communities. We are trusted by families up and down the country who need sensitive and respectful palliative care to provide support that evolves to meet changing needs. All whilst ensuring a person’s choices and wishes are met, right up to the end of their life.
Call us on 0808 239 1525 and our friendly care experts will discuss your care and support needs. You can also fill out our online enquiry form or email info@prestige-nursing.co.uk. We provide impartial guidance and advice so you make the right choice for you and your family.
