A guide for people who need palliative care
Introduction
What does palliative care consists of?
When is it time for palliative care?
Who delivers palliative care?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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? 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:
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:
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:
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.
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:
Not every care agency or care provider can provide palliative care as they may not have the experienced staff to implement individualised care plans.
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.
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:
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.