Navigating the 5 Stages of Palliative Care: A Guide for Caregivers

What is Palliative Care?

Palliative care is care provided to someone with a terminal illness. Many assume palliative care is the same as end-of-life care but end-of-life care actually only refers to Stage 4 of the 5 Stages of Palliative Care. Palliative care is much broader and includes all of the care provided to someone from the moment they’re diagnosed with a terminal illness to bereavement support for family and caregivers.

Palliative care can take place in the patient’s home, a care home, a hospital or a hospice. The setting for palliative care is determined by the patient’s medical conditions and personal preferences. Many choose to receive care at home so they are surrounded by the belongings they cherish and the people they love.

The five stages of palliative care are:

• Stage 1: Initial Assessment and Care Planning
• Stage 2: Emotional Preparation
• Stage 3: Early Stage Care
• Stage 4: End-of-life Stage Care
• Stage 5: Bereavement Support for Family and Caregivers

This blog post will examine each of these 5 stages of palliative care and will provide advice relevant to informal and professional caregivers.

Stage 1: Initial Assessment and Care Planning

The first step of every palliative care journey is the creation of a bespoke and personalised care plan. This care plan is created in conjunction with the patient, their family and their broader palliative care team. If you’re using a home care agency, you should expect involvement from the Registered Manager and the Field Care Supervisor. 

The care plan is tailored to your specific medical conditions and symptoms. It will include information about your medication routine and other daily activities. It will also outline your physical and emotional needs and should include a section for future planning. GPs, doctors, nurses, social workers and occupational therapists should all be encouraged to have an input.

Future planning goes beyond creating a will that outlines what happens to your money, property and possessions after your death. Consideration should also be given to advanced decisions, also known as living wills, and assigning someone as your Lasting Power of Attorney, who is someone you give permission to make decisions on your behalf if you’re unable to.

The care plan is a working document that’s under constant review. It will be updated as your needs and preferences change. All palliative care patients need to complete Stage 1 of the 5 Stages of Palliative Care but some might skip later stages. For example, some patients might already be at Stage 4 when they’re first diagnosed with their terminal condition.

Stage 2: Emotional Preparation 

After you receive a terminal diagnosis you may experience a range of emotions, including anxiety, fear, and depression. It’s important to seek emotional support if you feel this way and to speak with a counsellor, family member, religious professional or spiritual professional. It might also be recommended that you discuss your emotions with a qualified therapist. Whoever you choose to talk to, they will help you and your family to prepare for what’s ahead. 

You may also want to consider complementary therapies, such as music therapy, and physical activity. Those that are able to exercise report that physical activity has a positive impact on emotional well-being, even for patients with advanced cancer. 

Stage 3: Early Stage Care

One of the main goals of your palliative care team is to ensure you live as comfortably as possible, while maintaining as much of your independence as possible. Home care services can assist with these two goals and might entail as little as one weekly visit to employing a full-time live-in care assistant. The amount of support you need is determined by your personal preferences and specific care needs. Care assistants can support you with daily tasks, such as cooking and cleaning, as well as with more expert activities, such as personal care and medication support.

In some cases your home might require adaptations to allow you to move around safely. An occupational therapist can advise on the specific adaptations and equipment best suited to your needs. You can request an appointment from an occupational therapist via your GP or you can ask social services at your local council to organise a home assessment. Most local authorities will provide up to £1,000 to cover the cost of home modifications, regardless of your income. This can be used to pay for security lights, ramps, or grab rails. 

If your mobility needs go beyond the use of ramps and grab rails, you might be eligible for a Disabled Facilities Grant to pay for walk-in showers, hoists, and stairlifts. The maximum grant available varies by country:

• England - £30,000
• Wales - £36,000
• Northern Ireland - £25,000
• Scotland - Not Available

There are also a host of other gadgets you can find to help with everyday tasks from going to the toilet to cooking and eating. The NHS has a useful list of equipment that you can find here.

Stage 4: Late Stage Care

At Stage 4 end-of-life care begins. The biggest priority is to ensure your loved one is as comfortable as possible. Caregivers will also provide patients with psychological, emotional and spiritual support to make their final days as peaceful and stress-free as possible. At this stage you should consider contacting your local hospice for additional support. If your loved one wishes to stay at home, a live-in care assistant is required. Alternatively your loved one may prefer to move into a palliative care home.

Stage 5: Bereavement Support for Family and Caregivers

The final stage is bereavement support for loved ones and caregivers. Everyone handles bereavement differently and there is no one size fits all solution. At Tiggo Care we offer all of our palliative care assistants free counselling via our employee assistance program and we recommend family members try counselling too. If you would rather something less formal, religious professionals and spiritual professionals also provide bereavement support.

If you’re really struggling then you should consider contacting your local NHS mental health services. They can offer you counselling, therapy and support from trained mental health doctors. 

If none of these options sound right for you then you should take a look at Mind’s comprehensive list of organisations in the UK that provide information and support on bereavement.

Conclusion

In conclusion, caregivers do not have to navigate the 5 stages of palliative care on their own. There are a host of government, charitable and professional organisations that can help you at every stage and it’s important that caregivers reach out to these organisations and make the most of the services they offer. The earlier you seek support the easier it will be.