Palliative Care

A guide for people who need palliative care

Introduction

  • Palliative care should not be confused with “end of life care”
  • Definition of palliative care
  • Historical importance
  • 4 Myths about palliative care/4 Facts about palliative care

What does palliative care consists of?

  • Benefits of palliative care
  • Is palliative care effective?
  • How is palliative care Implemented?
  • Palliative care service

When is it time for palliative care?

  • Assessment of needs for palliative care?
  • Before the assessment with a Care Manager you may like to consider questions you would like to ask them
  • What sort of illnesses may require palliative care? Examples
  • Palliative care for Dementia may include

Who delivers palliative care?

  • Care agencies
  • Choosing – Quality & Assurance Care
  • Criteria and standards to ensure quality of care

Introduction

The majority of us would like to live as independently as we possibly can for as long as we possibly can, but as we get older or may suffer ill health, we may need support and assistance in achieving that goal.

Living with a serious illness such as diabetes, heart problems or dementia can be very difficult and challenging if you are elderly and living alone. Any serious illness can invoke feelings of hopelessness, anger, sadness and isolation, even if you live with family.

You may worry that due to physical and mobility difficulties that you may need to give up your independence and move to a care home. This may not be ideal as you may feel that you would not only lose your independence but also your identity.

There are choices available that can enable a person with a terminal or chronic illness to be cared for at home with the view to providing a holistic care package, which can support both them and their loved ones.

Palliative care is available at home through care private care agencies who will work alongside the Client and liaise with their Client’s GP regarding medication, prognosis, care plans and any additional medical treatments.

Palliative care should not be confused with “end of life care”

  • The aim of End of Life care is to help people who are considered to be in their last year of life, (in so much as a timeframe can be forecast) live as well as possible and to die with dignity.
  • End of Life care also refers to help with any legal matters.
  • End of Life care continues for as long as is needed.
  • ‘Palliative care’ may be part of the care package that may be needed as part of ‘End of Life Care’.

Definition of palliative care

  • As a broad definition, palliative care is the management of both physical and mental problems, including stress that is associated with patients that are suffering from a terminal or chronic illness.
  • Palliative care cannot cure or treat the illness, but it does help to relieve the symptoms that are linked with the illness or disease to help promote an active and fulfilling lifestyle in so much as the illness allows. (quality of life).
  • Palliative or comfort care (as it is sometimes called) can be provided alongside curative treatments to help lessen the side effects of some of the more aggressive types of treatment such as chemotherapy or surgical procedures.
  • Palliative care focuses not just on the improvement of the physical quality of life but also on the enhancement of mind and spirit. It supports not just the person receiving the care but also helps enable loved ones to cope with the situation.

Historical importance

The concept of palliative care as we now know it has its roots in the opening of St Christopher’s Hospice in London (1967). Dame Cicely Saunders undertook the progressive philosophy that a holistic care which includes social-emotional and spiritual support would greatly benefit that management of the medical symptoms experienced by patients who were terminally ill. Palliative care is no longer thought of as a progressive philosophy and has now become acceptable but may not be available to everyone.

4 Myths about palliative care

  1. If you have palliative care, then you will not receive any more treatments for your illness. This is untrue. You can still have treatment for your illness, but you will have extra care to make sure that your pain and any side effects are managed effectively whilst you live at home.
  2. Palliative care is just about pain management. This is untrue. It means that you will have support for your emotional and psychological needs including helping you to talk to your family about your illness and concerns.
  3. Palliative care can only really take place in a hospital or a Hospice. This is untrue although you can receive palliative care in both places; you can more often receive care in your own home given by specialist carers.
  4. Only people that are terminally Ill can have palliative care. This is untrue. If you are experiencing difficulties after treatments or have recently had a surgical procedure or you have an acute illness you may need some specialised help to help you recover.

4 Facts about palliative care

  1. It can be started at any time during an illness; you do not have to be terminally ill to access the care.
  2. It can happen at home it does not need to happen only in hospital or just if you are in a Care home.
  3. It is not just about being supported by doctors or nurses; it is also about being supported by social workers, counsellors, therapists, dieticians or by just having someone outside of the family to talk and be able to vent your feelings
  4. Every person has their own view of their quality of life and that should be respected and supported.

What does palliative care consists of?

It provides supportive and practical care. Support may be as basic as help with getting in and out of bed including personal care or to arranging meetings with spiritual leaders or contacting estranged family members.

Provision of help and support to control the symptoms of the illness; this can be in the form of controlling chronic pain that is associated with the illness to support with personal care to accessing complementary therapies.

Support the provision of a ‘holistic approach’ to enable a fulfilling lifestyle, peace of mind and enjoyment of interests and activities. Companionship and transport to a community event.

Enabling the client to live as physically and mentally active as possible; acknowledging the client’s’ creative needs, goals and dreams. This can be supported by practical help with laundry, cleaning, and gardening.

Help the client by providing unbiased and accurate information that they may need in any decision-making process or through accessing professionals that can provide the information needed.

Provide support not just for the client but also for their family and loved ones to enable them to manage changes and develop coping strategies. By supporting the family, the client is also supported.

The capacity to access nutritional advice and meals that will help the clients to feel healthy and hydrated especially if they suffer from nausea and other side effects from their illness or medications.

Benefits of palliative care

Research (www.nice.org.uk) has shown that people who have received palliative care at home have experienced symptoms that are less severe than people who have not. Essentially they have experienced a better quality of life; less pain; and less depression.

People who can benefit the most from palliative care are people who have been diagnosed with a serious illness or complex health problems such as dementia, heart failure, diabetes, Parkinson’s and cancer. Palliative care can be available in any care setting but ideally in the client’s home.

It can be tailored to the values, beliefs, culture, personal goals, and preferences of the client. Families and loved ones can also feel less stressed, more supported and additionally more informed than if their relative was being cared for in a care home or hospital.

Is palliative care effective?

Even with the complex illnesses and ageing, it is possible to formulate a Palliative Holistic care plan that focusses on improving the quality of life. A study that was published in August 2010 (New England Journal of Medicine) found that in a study of people with lung cancer who had received palliative care they had significantly lower rates of depression than patients that only received standard care.

How is palliative care implemented?

There are many systems that are in place that support people who are in long-term care, but it has been proven that care of the elderly at home can be as supportive, more effective and less expensive than care in a care home.

Palliative care may be needed over a considerable amount of time (months or years) and may need to be reassessed as some difficulties may be overcome to be replaced by others e.g. it has no time frame.

Sometimes treatments for an illness may get to the point that the management or remedy of the disease is causing more harm than healing. This is especially in many cases of cancer where an aggressive cancer is treated with an equally aggressive treatment.

Palliative care packages will depend not just on the needs of the client but also their specific goals. Every package is as different as the client that is receiving the support. The client’s needs are assessed and discussed before any implementation.

Palliative Care services

Packages will depend not just on needs but also on your own specific goals. Ageing is not about chronological age as everyone ages at a different rate just as illnesses affect everyone differently. Care providers will have a range of services which may be included in a Palliative Care Plan.

When is it time for palliative care?

As we get older, we may require more and more support with day to day tasks, as we become less and less agile and therefore less active. Sometimes it may be your GP or your family that first alerts you to the possible need to access palliative care.

There is evidence to show that the health problems and support that elderly people need are under assessed. This may be due to the complexity of both their medical and social needs. This supports the need for the provision of quality palliative care of the elderly within their own homes.

Assessment of needs for palliative care/palliative care services

Illness can affect everyone in different ways so it is important to find out just how your illness or difficulty is affecting you in order to decide on the best and most appropriate support for you. An assessment also helps to decide which member of the care team would be best suited to your needs.

During an initial meeting, the care providers will want to know how you are coping on a day to day basis. They will also want to know how your illness affects your family and loved ones. At this point, it is useful to remember that pets are very important and are also part of the family unit.

Carers will also need to know how your illness affects you physically and how it affects you emotionally. This is a reliable platform on which to plan goals (physical/social) around medical and health needs. The palliative carer will also liaise with your doctor and other health professionals as well as your family if you so wish.

Guide Plan Example

  • As with any form of care, good communication should always be the basis of the relationship.
  • Palliative care providers will:
  • Encourage you to listen to your inner voice and to express your feelings.
  • Encourage you to talk about what is important to you.
  • They will try to explain things that you are worried about to your loved ones.
  • They will liaise with your doctor and any other health workers.
  • They will make sure that the care that you are receiving is meeting the goals that you have set or wish to set.
  • They will help you to manage any distressing symptoms that you are experiencing.
  • They will help you to make future plans or decisions by getting information or appropriate professionals to talk to such as solicitors.

Before the assessment with a Care Manager, you may like to consider questions you would like to ask them.

  • What expectations should I have about palliative care?
  • What are your recommendations for my care package?
  • What decisions do I or my family need to make about any of the aspects of the care Plan?
  • Can you talk openly to me and my family about my illness and difficulties?
  • Can we look at the positives and the negatives of the care plan?
  • How will you communicate with my GP and other care professionals that work with me?
  • How are you able to support me when I have severe pain or discomfort?
  • Will you talk openly with me and my family about my illness or difficulties?
  • What kind of support can give to my family?

What sort of illnesses may require palliative care? Case Studies

The following examples are case studies that draw on complex needs that may require more than one carer to support the client or use senior care professionals that specialise providing support for multifaceted needs.

Dennis, aged 78

Dennis has dementia and finds many daily tasks difficult or he just forgets to them. He forgets to take his medication and often he just forgets to eat. He has lost a lot of weight. His family rarely visits because they feel that he is coping well or that is what he tells them. He would like it if they visited and he would also like it if he was able to access a support group or group activities as he enjoys the company of others. He would like it if someone helped him access having meals delivered.

Dennis’s palliative care package may include:

  • Helping Dennis to talk to his family about the difficulties that he is experiencing.
  • Assisting Dennis to access ordering and delivery of precooked meals.
  • Supporting Dennis by organising his medications and timers to remind him.
  • Empowering Dennis to attend a daycare centre or club on a regular basis.

Alma, aged 84

Alma has hypotension, unstable angina and arthritis. She finds it difficult to cope with day to day living. Additionally, she finds it hard to come to terms with being unable to do things like shop, prepare meals and finds it difficult to cope with pain and immobility due to her medical conditions. She is proud of being independent but wishes that her family understood that she likes living in her own home and does not want unless absolutely necessary resort to living in a care home.

Alma’s palliative care package may include:

  • Make sure that Alma has access to her medications and doctor appointments.
  • Help with shopping and meal preparation.
  • Support to enable her to express her feelings to her family.
  • Possible live in support if her mobility gets to be very difficult.

Carrie, aged 88

Carrie had breast cancer in the past, and although the treatment was successful, she has recently been diagnosed with secondary cancer in her lungs. Her children and grandchildren know that Carrie had cancer in the past but are unaware of her recent diagnosis. Carrie is quite fragile and any form of treatment may be too aggressive. Carrie feels that she wants to live at home as long as she possibly can but needs help to tell her children about her decision not to continue treatment and live at home.

Carrie’s palliative care may include:

  • Support Carrie to help her family understand her wishes.
  • Liaise with Carrie’s medical doctor regarding pain relief.
  • Provide respite care if needed.
  • Be a listening ear.

Palliative care for dementia may include

A prime example of providing palliative support for a person with Dementia (especially if they want to help with meal planning and preparing meals) is through making a favourite childhood recipe. Cooking can be a tangible yet moving experience as memories can come flooding back.

Baking with someone who has dementia can be a rewarding experience for the client and the carer (or family member/ loved one) it is a great way to catch up and talk. Times like this are precious as it can be a time to reminisce over a cup of tea and a piece of cake.

Baking may be something that the person with dementia may be able to do on their own – read recipes, collect ingredient, etc., or they can be involved in different stages of the process. Focus on the enjoyment of the activity, not a perfect result.

Consider their safety in the kitchen – alarms etc. Wear glasses, colour of work surfaces clearly labelled ingredients, may need help with kneading, whisking or stirring depending on dexterity. Alarm to set off when baking is complete.

Who delivers palliative care?

Although palliative care can take place in a hospital or a care home, it has become more affordable to have private care at the client’s home.

Medications and therapies such as oxygen therapy can take place at home and administered by palliative care trained nurses or by trained senior care staff.

During a visit from your palliative carer you can talk to them about anything or everything including:

  • Your treatment including any medications that have been prescribed for you including their side effects.
  • Any emotional and social challenges that you are experiencing such as wanting to speak to friends or seeing family to explain your illness.
  • Any spiritual concerns that you may have. If the palliative carer cannot answer your concerns, then they will, with your permission contact an appropriate person.
  • Your goals and dreams. This may be a simple as wanting to plan and cook a meal (your carer can help) or it could be more complex, such as advance directives to doctors or what to do if you are no longer able to speak for yourself.

Care agencies

Not every care agency or care provider can provide palliative care as they may not have the experienced staff to implement individualised care plans.

Choosing – Quality & Assurance Care

In-home care services agencies must have all of their staff checked by the Disclosure & Barring Service (DBS), their references scrutinised and their quality of care assessed so that it meets both the agency’s and the client’s standards. Selection of staff is made through a stringent selection process which may include further training for successful candidates.

Care staff should be personable and approachable. They should not be intrusive, and personal care should be carried out with respect and understanding.

Criteria and standards to ensure quality of care

CQC sets that standards that care agencies need to provide for their clients (and this includes clients who are receiving palliative care). This includes making sure that the services offered meet the needs, rights and circumstances of the client.

Examples of standards include checking how medications are managed; highlighting safeguarding issues; looking at good outcomes especially in cases of long-term care; involvement of the client in the assessment of their needs specifically involving the client in the choice of carer when personal care is needed; evaluation of clients being treated with compassion, dignity and respect.

Standards are also maintained internally through appraisals of staff by the Care Managers and directives from the CEO of the Agency.

The criteria used to measure the quality of care are:

  • Respecting and involving people who use the service
  • Care and welfare of people who use the service
  • Cooperation with other providers
  • Requirements relating to workers
  • Keeping records

All of these issues matter to the client.

All care facilities and care agencies that provide domiciliary care in the UK are inspected by the CQC on a regular basis. (Care Quality Commission (CQC) published a new strategy, Raising Standards, Putting People First — Our Strategy for 2013 to 2016).

There is a wide range of services available to meet your needs and although some of the benefits to access these services are means tested, you may be eligible for the payments to be paid directly to your choice of care agency. A good care agency will not pressure you into signing long term contracts or expect payment for care prior to you receiving it.