Please find below some of the questions that people receiving palliative care frequently ask.
What do we say to each other after a diagnosis?
Following a diagnosis, the patient and relatives may have different ways of absorbing and coming to terms with the news. They may not know what to say to each other due to the immediate shock, and therefore communicate in superficial terms or simply avoid the issue and its implications as though things were as before. Attempts to retain a sense of ‘normality’ by denying the reality of what is happening may be helpful to begin with, but this response can usually only be sustained in the short-term. It is normal to experience a degree of coming and going of feelings, possibly alternating from numbness or emptiness to other times perhaps feeling surges of emotions, like anger, sadness, guilt, etc, but everyone responds differently and there is no right or wrong way of responding or being. Serious and painful conversations should always be entered into carefully and periodically, with sufficient time left in between for everyone to step back in order to allow time to be absorb and reflect on the conversation afterwards.
Regardless of future options and scope for remaining hopeful, uncertainty and worry can be every bit as difficult to deal with as bad news and actual events. Exploring potential future scenarios – how we might deal with them and how they might make us feel is important. It is sometimes easier to do this with situations and problems in anticipation before they arise, than to leave them until later when they do. Clarifying options is also empowering because it encourages sharing and participation.
If challenging situations and setbacks do occur later on, it is possible to refer back to earlier conversations. A common problem when needing to initiate a conversation on a difficult subject is how to get it started. Being able to refer back to a previous conversation can be helpful – “Do you remember you said that if this happens, you might feel such and such? How are you feeling about it now?” This can be a useful starting point.
The diagnosis of a life-threatening illness can divide and isolate people and it is important to bear in mind that ‘communication’ means different things to different people, especially in times of uncertainty and crisis. Someone might communicate in the hope of sharing feelings and connecting emotionally, and may talk about ‘sharing the emotional burden’ or the pain. Someone else may prefer to talk more about how to allocate practical tasks to keep normal life running.
Both approaches are necessary and valid, and it is good to be able to engage with both, but people may tend towards one more than the other. This can give rise to misunderstandings, when one person possibly can’t see how the other can be so practically-focused and think they are being “unfeeling”, and the other’s more emotional focus is maybe seen as an unhelpful distraction or them being “selfish”. If barriers and misunderstandings like these do arise, words are sometimes incapable of helping. Eye contact, touch and silence can then become valuable aspects of meaningful communication instead.
It is also common for carers and relatives to repress their own feelings out of over-regard for those of the patient, as though they are the only person who can legitimately have and express their feelings. The reality, however, is that patient and the family are the same unit of care and everyone’s feelings and reflections are important. It is by sharing them that we can help each other to ease the emotional pain and feelings of isolation. Tears are often shed, and this is important because crying opens us up to being comforted, and also helps us to express and ease our emotional pain. Sometimes people mistakenly believe they need to be strong at all times for each other, but this can sometimes give rise to extra stress and can put more pressure on everyone. Tears give permission to others that it is ok for them to cry too, and indicates we are open to support and reassurance.
Openness and honesty are also very important and these can be lost if we try to be too strong or appear to others as if we are coping too well. Not being afraid to show some emotion and weakness can have the effect of bringing people together at difficult times. It is also important to acknowledge that some feelings will not always seem helpful during difficult times. Anger and frustration are natural emotions but they are often difficult to express in a constructive way. People fall out and words can be said and then regretted later. It is a good idea for the patient and family to acknowledge that they are under an unusually high level of stress and worry. If emotions erupt and people fall out, this is sometimes only to be expected. We say things we don’t mean when we can’t feel the right words, or when someone is irritating us by not seeing things as we do. We criticise and scold someone even though we would prefer to be telling them how much we love them.
Families often have long-standing “issues” which are manageable under normal circumstances, but which erupt in times of crisis. Misunderstandings can lead to falling out, but this also creates an opportunity to make amends and to reach a better level of mutual understanding. Forgiving and making up can help to remove barriers and obstacles. Try to be sensitive to the feelings of others, do your best to understand each other, and don’t be too hard on yourself when you get it wrong.
Having someone to talk to who is not a member of the family, such as a Macmillan nurse or Palliative Care Social Worker can be very helpful to clarify feelings and help facilitate helpful communication between family members during times of crisis. We sometimes talk about families having group counselling-support or ‘mediation’ when they are struggling to find the right words to say to each other – or if they have unresolved previous issues which are inhibiting and getting in the way of proper communication in the here and now. Having someone ‘external’ stepping into the family arena (or into a 1-1 relationship) can potentially help facilitate communication but it does also mean letting a ‘stranger’ into your relationship. This can feel invasive and uncomfortable and might not get off the ground until some basic ‘trust’ has been achieved. On the other hand, the very fact this person is unfamiliar can equally be a very positive thing, because couples often struggle with the reality that the person who has the illness is one day not going to be there any more for the surviving partner. This is a particularly hard reality to accept and patients are sometimes more concerned about how their partner will cope and manage when they themselves are gone, than about their own expected death.
Some couples are so close they don’t have many external connections beyond their immediate relationship. It can therefore hit the surviving person much harder in later bereavement, when they lack the social contacts or the communication skills to form new links and create a new life. Having a mediator to engage the couple together and also spend time with each party separately can help to gain a sense of opening up honestly to another person who is not their partner. Although this might initially feel uncomfortable, as though someone else is coming ‘in between’ the couple, the reality is that if new ways of communicating outside the relationship are not explored while the other person is still there to refer back to and time remains to talk things through properly, then the shock of death and loss might prove much more difficult to deal with later on.
David McCracken – St Gemma’s Hospice – 29th July 2014
How do I answer my children's questions about what is going to happen?
It is important not to diminish the seriousness of the situation by giving partial or factually incorrect information. The truth will become apparent in time whatever you tell the child, so it is important to ensure that nothing you say will be contradicted later. You need to retain your child’s trust so try and be honest with them at all times. A ‘right time’ might never present itself, so it’s more important to get the information across so they know what is happening. This is better than leaving them to ask increasingly difficult questions, which become increasingly difficult to answer.
Where can I find information about what financial benefits are available to me?
There are many ways to get advice and support, but many people have never claimed welfare benefits before and are unaware of possible grant funding. It is important to bear in mind that social security means you pay National Insurance when you are healthy, so you can expect financial support if your health suffers and leaves you incapable of working.
Loss of appetite and weight loss. Will food supplements help?
Loss of appetite and weight loss are common symptoms during illness and may be difficult for you and your family to deal with. Eating less can lead to weight loss, however in some illnesses, poor appetite and weight loss, especially loss of muscle, may occur due to the disease itself. This is known as cachexia and particularly occurs in some people who are suffering from cancer.
As well as the disease itself, some treatments or medications may also affect eating and drinking. Other symptoms such as a dry or sore mouth and nausea may make it more difficult to eat. These can often be treated and appetite may then improve, however weight loss due to cachexia may not be reversible even if you are able eat more.
If you are concerned about your eating and drinking or are experiencing a loss of appetite, you are advised to discuss this with a health care professional who may be able to suggest practical ways to help.
Do I have to pay prescription charges?
In April 2009 the law was changed to add cancer to the list of conditions that give exemption from prescription charges. There are still people who are not claiming this exemption.
Patients undergoing treatment for cancer, including the effects of cancer or the effects of current or previous cancer treatment, are able to apply for a certificate that will give them exemption. They should ask their doctor for an application form which will need to be countersigned by their GP, hospital or service doctor (or, at their GPs discretion, a member of the practice who can access their medical records).
What is end of life care?
End of life care is an important part of palliative care, and usually refers to the care of a person during the last part of their life, from the point at which it has become clear that the person is in a progressive state of decline.
End of life care is usually a longer period than the time during which someone is considered to be “dying”. In the UK it is mainly health care professionals who use the term end of life care, whereas patients and their families are more likely to refer to terminal illness and terminal care. The time at the end of life is different for each person, and each person has unique needs for information, for support and for care.
What is advance care planning?
There may be times in your life when you think about the consequences of becoming seriously ill or disabled. This may be at a time of ill health or as a result of a life-changing event. It may simply be because you are the sort of person who likes to plan ahead. You may want to take the opportunity to think about what living with a serious illness might mean to you, your partner or your relatives, particularly if you become unable to make decisions for yourself. You may wish to record what your preferences and wishes for future care and treatment might be or you may simply choose to do nothing at all.
One way of making people aware of your wishes is by a process of advance care planning. Planning for your future care – a guide by the Dying Matters Coalition, provides a simple explanation about advance care planning and the different options open to you.
How can complementary therapies help?
Complementary therapies can be used alongside conventional treatment to aid relaxation, help relieve stress and tension and to promote sleep. They have been found to be helpful in the management of many symptoms including pain control, nausea, breathlessness and anxiety. They can also be used in wound care, mouth care, skincare and in respiratory problems. They are gentle, nurturing and help to promote a sense of wellbeing. They can also be helpful in increasing self-esteem and a positive body image.
What is a living will?
A living will or an ‘advance directive’ is a written statement in which you can record any of your decisions about which treatments you would like/would not like to have. This statement will help doctors and your family to know what your wishes are should you become too ill to tell them. A living will provides an opportunity to record any religious or cultural issues that are of importance to you.
More information on living wills and advanced care planning can be found here, via Macmillan Cancer Support.
What palliative care will you receive in hospital?
Most palliative care in hospital is given by the nurses and doctors on the ward where you are staying. If you have issues that need more specialist input, your ward team can refer you to the hospital specialist palliative care service.
The hospital palliative care team is an advisory service and provides specialist assessment and advice on the management of a range of issues that may face patients and their relatives and carers. This may include:
- physical symptoms such as pain or vomiting
- talking through treatment choices
- coming to terms with difficult news
- help with talking to other family members
- practical advice on housing or benefits
- spiritual support
- planning for place of care and facilitating patient choice
- referring on to hospice or community palliative care services in Leeds and beyond
More information can be found under patients and carer information.
What services are available if I wish to be cared for at home?
Many people who are living with a life limiting illness will want to be cared for and die at home. Health and social care services in Leeds are working hard together with your GP to ensure more people can be cared for and die at home.
District nursing teams will always do their best to ensure patients are cared for at home or their discharge from hospital happens as quickly as possible. Your GP may also refer you to hospice community team for additional support.
More information about district nurses.
What is hospice care?
Sue Ryder Care Wheatfields and St Gemma’s Hospice care for the whole person, whilst aiming to meet all needs – physical, emotional, social and spiritual. At home, in day care and in the hospice, they care for the person who is facing the end of life and for those who love them.
Nearly half of all people admitted to a hospice return home again. Hospice staff and volunteers work in multi-professional teams to provide care based on individual need and personal choice, striving to offer freedom from pain, dignity, peace and calm.
What services do hospices offer?
Do you have to pay for hospice care?
The services provided by Sue Ryder Care Wheatfields and St Gemma’s Hospice are free.
Do all patients have to come to a hospice for care?
No, in fact the majority of our patients are cared for in their own home by their family with support from their local doctor, district nurse and with specialist advice from the hospices specially trained staff. Sometimes patient problems are too complex and an admission is necessary to try and overcome these problems.
Patients who are actually dying have a choice of whether to stay at home or to come in to the hospice. This may be influenced by the support available in the home and the patients and carers choice. It is the case that needs can change throughout the illness and so do the choices of the patient and we are happy to support patients where they want to be.
Can I choose which hospice I would like to go to? What options are available to me?
Leeds has two hospices providing palliative care for people over the age of 18. St Gemma’s Hospice is based in Moortown and Wheatfields is in Headingley. In most cases, patients registered with a GP (family doctor) in north-east, east and south-east Leeds will be referred to St Gemma’s Hospice. Patients registered with a GP in north-west, west and south-west Leeds are referred to Wheatfields Hospice.
Both hospices offer the same range of services. If you require in-patient hospice care, you would normally be referred to the hospice covering the area of Leeds in which you live and where your GP is based.
In certain cases, patients have a particular request to be cared for in St Gemma’s or Wheatfields even if this is not the hospice which serves their GP. This may be for personal reasons such as previous care provided to the family or for ease of access. Where possible, both hospices will accommodate requests for admission of patients outside their catchment area if there is a need.
Patients living on the outskirts of Leeds may also be referred to local hospices such as Wakefield Hospice or Harrogate if this is nearer than St Gemma’s or Wheatfields.
How can I be referred to a hospice or palliative care service?
Your own GP (this is your family doctor) or a hospital doctor will normally arrange for you or a family member to be referred to a hospice or palliative care service. Do talk to your doctor or any of the staff caring for you if have worries or concerns or want to discuss the option of a referral. You will often be referred to a home-care service at first. The home-care service can arrange for you to stay in an in-patient unit if it becomes necessary.
If there is no bed in a hospice available, what happens?
There are occasions when your local hospice may not have a bed available. If this were to happen, the hospice would liaise with the neighbouring Leeds hospice. If a bed was available at the alternative hospice, you would be asked if you wished to be admitted there or preferred to wait for a bed at your local hospice.
If neither hospice had available beds and urgent admission was necessary, you may be admitted to hospital where medical and nursing care is available and transferred to a hospice when a bed became available.
How are hospices funded?
Most hospices (including Wheatfields and St Gemma’s) are independent organisations and not part of the National Health Service. Some government funding is provided to hospices through the NHS. The majority of their funding must be raised through a variety of means including donations, charity shops and other fundraising initiatives.
How long do people stay in a hospice if they are admitted?
This depends on the patient’s particular needs. There is no minimum or maximum length of stay. Over the last few years the average length of stay has been about two weeks. The hospice does not offer long-term care as this is a service that is offered by other services in Leeds such as care homes however some patients do sometimes stay longer than usual because of very complicated and changing needs.
Aren't hospices places where people only come to die?
Not at all. Many patients under our care stay at home throughout the course of their illness and die peacefully in their own home. Many patients have only one admission whilst others have two or more. Some patients choose to die in the hospice once they get to know us and death is approaching. Other patients and sometimes their families too will change their minds about care at home when death approaches and we are happy to support them with the choice that they make.
Do you have to be a Christian to access a hospice?
You do not have to be a Christian or religious to go to a hospice. The service ‘Hospice Information’ says: “Hospices and palliative care services try to meet the needs of people from all cultures and religions and of those with no faith at all. Although it is true that many hospices have a Christian foundation, patients and staff are from any faith or none.”
How can carers get support?
Your own needs are important and it is important to recognise them, so that you can be supported in your role of Carer. Often all the attention is placed on the person needing care and your needs can be overlooked. By getting in touch with a carers information and support organisation, you can look after your needs while also making sure that the person you care for is getting the best help and support available.
Leeds City Council website gives information on the advice and support available to carers in Leeds. They can also assess your individual needs through a Carers Assessment (see below).
There are also other organisations providing support and information to carers in the Leeds area. Making contact with one of them gives you an opportunity to discuss your circumstances and the needs of the person you are caring for.
Am I a carer?
You are a carer if you have the responsibility for providing or arranging care for someone else who, because of long-term illness, disability or old age etc., is not able to care for him or herself.
Some people are employed by care agencies to provide formal care in a paid role, but the vast majority of care in our communities is unpaid and is provided by someone who knows the person personally and informally. This might be:
- A parent
- A son or daughter
- A brother or sister
- A husband, wife or partner
- A relative, friend or neighbour
What is Carers Leeds?
Carers Leeds is an organisation that offers a confidential support and information service to carers. They also offer opportunities for carers to get a break from caring, meet up with other carers for mutual support, friendship and have to some social time. Carers Leeds can be contacted by telephoning 0113 246 8338 and / or by email: firstname.lastname@example.org
What is a carers assessment?
A Carers Assessment is an opportunity for you to talk about your situation and the things that could make life easier for you, as a carer. The assessment is carried out by someone from Adult Social Care at Leeds City Council.
The assessment should look at a range of different issues including:
- Access to welfare benefits
- Getting a break from caring
- Equipment or adaptations to the home
- Opportunities for contact with other carers
- Services for the cared for person to enable you to continue working
- Signposting to services that would help if you had an emergency and were no longer able to care
The assessment should also take into account your wish to work, engage in education, training or leisure activities.
If you wish to have a Carers Assessment, please contact Adult Social Care: 0113 222 4401.
Where can I access support for bereavement?
A good starting place is the Leeds Directory of Bereavement Services, produced by The Leeds Bereavement Forum. It lists the names and contact details of many services in the Leeds area offering various types of bereavement support. These include counselling services, support groups and telephone help-lines, geared towards a variety of social groups including adults, older people, children and teenagers, as well as other social and ethnic minority groups.
For more information please go to our bereavement section.
What is the role of the interpreter?
Some patients and service users may experience difficulties in communicating with their healthcare professional because English is not their first language or because they use Sign Language. Interpreters play a vital role in helping to overcome these barriers.
More information about interpreters