Palliative care at home for people with cancer

Palliative care is for people nearing the end of their lives to ensure they die comfortably with dignity and without pain. 

Anyone receiving palliative care for advanced cancer is entitled to high-quality care, whether they want to be cared for at home, in a care home, hospice or hospital. 

With an ageing population and more variety of treatments available, almost three quarters of people (74 per cent) living in England say they would want to receive end of-life care at home, according to palliative, neurological and bereavement support charity Sue Ryder. 

Sue Ryder estimates that the number of patients receiving palliative care will increase from 240,000 in 2018-19 to 379,000 by 2030-31. 

What is palliative care?

When treatment is unable to control the spread of the cancer or if the person is not well enough to have treatment, supportive or palliative care will be recommended.

Palliative care focuses on managing the physical and emotional symptoms of the condition for both the patient and their loved ones. 

Palliative care aims to make you as comfortable as possible by managing your pain and other symptoms.

It also takes a holistic approach where it can improve the quality of life as much as possible for both the person and their family and friends.

When you start to receive palliative care, a team made up of your GP, community nurses, social care workers and specialists will be the ones visiting you regularly.

What is advanced cancer?

Stage 4 cancer, advanced cancer, metastatic or secondary cancer usually means a diagnosis of cancer which has no cure.

Some people may have been diagnosed with a cancer that is already advanced when they are first diagnosed and for others, the cancer may have spread to other parts of the body or has come back after treatment depending on the cancer type.

If diagnosed with advanced cancer, some people can have treatment to control the cancer and can continue with their day-to-day lives such as working and doing the things that are important to them.

Some people can live with advanced cancer for a long time – sometimes for years.

What palliative care services can you receive at home?

What type of services you need will depend on the illness or condition. But all are provided according to your wishes and needs.

Some symptoms can be managed well at home. However some symptoms may be more difficult to manage effectively.

It is advised to speak to your GP who will be able to provide you with the information you need, what you can expect and help you make plans.

Palliative care services you can receive at home include:

•    Personal care, such as help with dressing, bathing and toileting
•    Continence care
•    Help with medication
•    Pain management, both physical and emotional
•    Help with mobility, including home adaptations to help you move around the house
•    Light housework
•    Meal preparation
•    Food shopping and prescription collection
•    Companionship to support your independent living

What are palliative care nurses and what do they do?

Palliative care nurses, sometimes called Macmillan nurses, are often part of the home care team, and specialise in managing pain and other symptoms.

They can often visit people in their own homes to see how the person is and make sure any symptoms are being managed. They can also provide support to families and loved ones to answer any concerns.

Palliative care nurses can also advise what financial benefits they can apply for.

Speak to your GP, doctor or nurse at the hospital who can arrange a palliative care nurse.

What pain relief is given?

International guidelines, known as the analgesic ladder, set out to advise what types of pain medication are most effective for different levels of pain. It recommends specific types of pain management for mild, moderate and severe pain.

•    Mild pain – paracetamol, ibuprofen or anti-inflammatory drugs can be used
•    Moderate pain – weak opioid pain medication such as codeine
•    Severe pain – strong opioid pain medication, for example morphine

For some types of pain, you may be given other types of drugs to take as well as your pain medication. 

You will be advised to take your pain medication regularly if you have frequent or constant pain. If the pain comes back before your next dose is due, let your doctor or nurse know so they can give you a more effective dose or drug. 

Caring for someone who is terminally ill at home

Many family members become carers if their loved one is nearing end of life.

If you become a caregiver to a family member, it is a good idea to get in touch with your loved one’s GP, nurses or social care worker for advice.

Some tasks you may carry out include personal care such as washing and dressing, help to manage medication and using the toilet.

Emotional support for relatives and friends

Many people feel shocked, upset, and scared after hearing the news of their diagnosis. These feelings will be also felt by families and loved ones.  

But whilst it’s tempting to hide any concerns from each other, it is good to talk about your feelings and how you are coping. 

Talk to those closest to you including children, family and friends. Let them know what is going on. What they can do to help, and how best they can support you.

If you can’t face talking about things, tell your partner, family, and friends so they can respect your decision.

Share day to day problems especially if they are financial, work or retirement concerns. Discussing your worries with each other can help start problem solving and ease stress.  

Each day, try and have some normal, non cancer time. It might be watching a film together. Walking and other outdoor activities have been proven to be very beneficial for mental health, reduce stress levels and can help keep a healthy lifestyle. Laughter and humour can help ease tension too.

Sometimes you can find you are both snappy with each other or find yourselves sitting in silence.  Remember that is a symptom of the stress you are both under and this is a temporary feeling. 

You can also speak to one of the following helplines for support.

https://www.hospiceuk.org/
https://www.macmillan.org.uk/
https://www.mariecurie.org.uk/
https://www.cancerresearchuk.org/

What benefits can people receive when they are terminally ill?

Approaching the end of your life is an intensely difficult time. One of the many things on your mind may be money.

If you can no longer work due to your illness or have previously received benefits, there is support in place to help.

The government has ‘Special Rules’ for people who are in the last few months of their lives. These rules enable people to be fast-tracked to getting Universal Credit or Employment and Support Allowance (ESA), and they usually get the full amount.

Since 4 April 2022, the length of time that Special Rules are enforced was doubled. This means people who are terminally ill can benefit from them if they have a year or less to live – previously this was six months or less.

From May 2022, the Special Rules for End of Life were extended to include Personal Independence Payment, Disability Living Allowance and Attendance Allowance. 

Do I need to write a will?

A will is a legal document that gives instructions about what happens to your money, property and possessions after your death. 

There are different rules for Scotland and Northern Ireland.

You can write your will yourself, but you should get advice if your will is not straightforward.

Your will needs to be formally witnessed and signed to make it legally valid.

If you want to update your will, you need to make an official alteration (called a ‘codicil’) or make a new will.

Marie Curie has information about making a will and offer a free will service, to find out more click here. 

Palliative care for people living with dementia

For people living with dementia and receiving palliative care for a cancer diagnosis, it is recommended that whilst they have capacity, they are provided with the opportunity to discuss their advanced wishes and are supported to make an advanced care plan. 

If capacity is lacking and they have appointed an attorney for health and welfare, the attorney can make decisions in their best interest. Family and relatives should be involved in ‘best interest’ decisions where possible too.

Advanced care plans are made together with a GP or healthcare team and are used to record any treatment and care wishes. They should be attached to the medical notes and be easily accessible to those involved in the person’s care. 

Dementia UK

Sheridan Coker, an Admiral Nurse from Dementia UK provides information about the importance of care plans and informs future care to people living with dementia, their families and loved ones.

She says: “Each person is different, and much depends on where they are in their dementia journey, deciding if they would even tolerate investigations as to whether they have cancer can be really difficult.

“When someone lacks capacity, it can be very difficult to explain to someone they need to receive palliative care.

“If a person has not got capacity to understand, you would then be considering what is in this person’s best interest going forward.  this is why advanced care plans can be so valuable and having an attorney in place that you have appointed to make best interest health and welfare decisions”.
 

Cognitive changes caused by chemotherapy

Some people who are receiving cancer treatment may notice changes in their memory, concentration, or their ability to think clearly. 

These are called cancer-related cognitive changes (CRCC) or chemo brain.

Ms Coker says: “The effects of ‘chemo-brain’ can dissipate for the person as their treatment eases but for people living with dementia, you could end up with lasting effects that can impact quality of life. 

“If the person has not got capacity, and no advanced clinical practitioner or attorney in place, people involved in the care of that person would consider best interests going forward”.
 

Giving bad news to someone living with dementia

A question the Admiral Nurse team is regularly asked is ‘how do we tell Mum that Dad has died?’ 

Ms Coker advises that it is their “human right to know that someone close to them has died, grief is normal, and everybody is entitled to grieve.”

People living with dementia might require additional support to understand and manage their emotions. 

Having pictures of that person around or playing music can help evoke good memories and positive emotions. 

Dementia UK has a free national helpline where you can speak to an Admiral Nurse. Please click here to find out more information.