Author Archives: Jackie Aim

Personal affairs and social needs

It is important that you have a chance to put your affairs in order. This may include a visit from a legal representative or person who has been officially nominated as your power of attorney.

Having close family and friends near if you wish. You may want to leave special messages for family and friends who cannot be with you.

Who would you want to give a special thank you to if you knew you would not see them again?

Who would you ask to care for your pets?

Any special arrangements you would like at your funeral?

If you have made a will, make sure your family and any power of attorney know where to find important documents.

Please see the My Power of Attorney website for more information on how to appoint someone with power of attorney.

Physical needs

A woman wearing a plastic apron and latex gloves talking to patient lying in a hospital bed

You can be reassured that everything possible will be done to take care of your physical needs and to make you as comfortable as possible.

Managing breathlessness: Being breathless is not related to a lack of oxygen. You may get relief by using a fan to get a cool breeze over your face. Nebulisers may be used to deliver some medicines. If your blood oxygen level does drop you may be given oxygen. If you need help to breathe you may need Non Invasive Ventilation. This is a way of helping you breathe using a firmly fitting face mask which gently assists you to take a breath while allowing your chest muscles to rest. As you breathe in you will feel a flow of air from the machine. As you breathe out you will feel a little resistance to help keep your airways open. You will also notice some noise from the machine which is normal. (NIV is not the same as artificial ventilation you have during an operation where a tube in placed in your windpipe).
Pain relief: This can be given as pills or liquid or skin patches; if you cannot take medication by mouth an injection or a syringe pump (syringe driver) can be used. A syringe pump has the advantage of giving continual pain relief.
Chest clearance: If you have difficulty coughing up mucous or phlegm, and it is making you uncomfortable, you will be give help to clear your airways. A specialist physiotherapist can help you with a variety of breathing techniques. If you are very tired they may use suction, which requires less effort from you. there are also some medicines which can help to dry up excess mucous.
Mouth care: A dry mouth and nose can be uncomfortable. Helping you to stay hydrated will help. This can be done by helping you to drink, or by giving you fluids through a vein. Small sponges and mouthwash will also help if you cannot drink much.
Eating: Supplement drinks and nourishing, easy to digest meals can be provided.
Personal hygiene: Staff will attend to this to help your comfort and dignity.
Bowel and bladder care: Pain medication, dehydration and lack of activity all contribute to developing constipation. Treatments and medications can be given for comfort. Occasionally bladder catheters are used to keep you dry.
Positioning: This is for comfort and to allow you to be active or to help you rest. Skin can be fragile and you may require a special mattress on your bed.

You have choices about all of these. Care will always be given and if you have capacity to make decisions you will be asked. Family and close friends will be asked if you do not have capacity or if you are unable to communicate your wishes.

Resuscitation

Your healthcare team will consider resuscitation on an individual basis. There are two reasons why CPR would not be attempted:

If you have made an advanced decision about refusing cardio pulmonary resuscitation (CPR).
This means that if your heart stops you would not want the medical staff to make efforts to get it to restart. If you have capacity you will have discussions with the healthcare team. You can ask for a second opinion. If you do not have capacity but have arranged a welfare power of attorney, they or your immediate family will be involved in these discussions on your behalf. If you do not have a power of attorney the healthcare team are responsible for making a decision based on all the information they have available at the time you require resuscitation. If CPR would not be successful for clinical /medical reasons, you or your family/power of attorney cannot demand that you must be resuscitated.
If the doctors don’t think CPR would be successful, they will tell you
Lung damage and some other medical conditions can make it far less likely that you would be resuscitated successfully without further medical complications or disability.

Making choices – medical decisions

Description: A mature woman patient consulting a GP in the surgery consulting room.

What treatment would you want?
What treatment would you not want?

Symptom relief. To relieve your symptoms and to keep you comfortable.
Pain relief. If needed, this will reduce your pain, reduce agitation and keep you comfortable. Medicines can be used which do not cause drowsiness. In the later stages you may be given morphine or other sedative drugs.

Importantly by using an anticipatory care plan, you have choices about what care you want. You can change your mind at any time.

You should discuss your decisions with your health care team and your family then write down your wishes. Keep spare copies, give some to close family and give one to your GP.

When to make your anticipatory care plan?

Couple reading There is no set time when an anticipatory care plan should be made, although it is best to think about what you want when you are well. The wrong time to do this is when you are ill, stressed or in the middle of an exacerbation or flare up.

You do not have to plan everything in one go. You can do it step by step over a period of time.

Here are some questions to ask yourself and to think about.

How do you feel about choices and care around the end of life?
What kind of care do you want?
What are you worried about?
Where you would prefer to be if you could not manage on your own at home?
- At home with extra support?
- In hospital?
- In a care home or in a hospice? Hospices can sometimes offer a short term respite and assessment to improve pain relief and symptom control to enable you to return home. They also offer excellent family support. Remember you are expressing your preference, even if you have a local hospice they may not have a bed available at all times so an alternative may be needed.
Your preferences and choices may depend on what services and support are available to you in your local area.
Do you have a Faith or spiritual beliefs which are important to you?
Have you made a will or appointed a power of attorney?

For more information please see our section on: Planning your future care.

What is an Anticipatory Care Plan?

A female patient in a hospital bed holding hands with the hospital chaplain

The process of telling others about your wishes is known as anticipatory care planning. Making a record of your personal care choices is the Anticipatory Care Plan.

We all grow older. We will all die sometime. Few of us are comfortable discussing dying and death.
Anticipatory Care Plans can help. They are flexible and provide a supportive and palliative care approach to managing diseases that do not have a cure. They can be used for longer periods of time when it is difficult to predict how a disease will progress.

Anticipatory care decisions are about:

The kind of care you would want to have.
Where you would ideally like this care to be given.
Who would you want to give this information to?

Each area of Scotland may have different facilities available.

You can change your mind and wishes, about what you want, at any time.

For more information please see a sample anticipatory care plan:

Anticipatory care plans are not the same as the Liverpool care pathway which has now been phased out.

End of life care usually refers to the last days. Palliative care (sometimes called terminal care) can be a longer period of time but it is difficult to predict how long a period of palliative care will last. For more information see Scottish Partnership for Palliative Care: Palliative care services by NHS Board.

COPD and anticipatory care

COPD is a long term condition which is not predictable and once lung damage has happened it is not reversible. The challenge of being unpredictable is that it is difficult to anticipate if or when your COPD will deteriorate. Everyone with COPD is an individual. Thinking about the kind of care you would want or not want if your COPD worsened is known as anticipatory care.

Anticipatory care planning is a process which helps people and their families make even the smallest of decisions about everyday life when things may become difficult.Everyone can benefit from putting their affairs in order, making a will, having insurance and so on, but what about your healthcare?

If you have a long term condition this may be particularly beneficial to you. It will help you to manage your condition, improve your health and enjoy a better quality of life. It can also help to reduce some of the stress related to increased symptoms, poorer quality of life, physical, emotional and financial worries. This can become increasingly important as things may start to change.

What is an Anticipatory Care Plan?
It is where you record your future plans and wishes. Important information contained in your ACP may be shared to ensure your needs and wishes are considered in the event of an acute deterioration in your health. You may wish to consider your preferred place of care and other important issues for many months or years before approaching the end of your life. You may not wish to do this just now and that is absolutely fine. Remember, you can change your mind at any time and you can change anything you have written in your plan at any time. Having a plan helps the key professionals looking after you to know what is important to you now, and in the future. If this time comes, anything you have written in this care plan will be carefully considered and respected.

So it is important to continually review your plan and if you make any changes, just remember to make sure you write the changes in your plan and notify relevant people so they are aware of them. However, an ACP is not legally binding, but past and present wishes are always taken into account when planning care.

After making an ACP you are expected to keep this in your possession and share it with anyone involved in your care. Please take it with you if you go into hospital so that the people involved are aware of your plan otherwise they may not be able to carry out your wishes. Many key professionals may be involved in ‘providing’ your care. If the information from the ACP can be shared with other people involved in your care, such as social work, home care provider, ambulance service. This will help you receive the care where and how you wish.

Palliative care is the phase of an illness when care focuses on your symptoms and quality of life. At this stage, it can be helpful to let others know what your wishes are. The period of time palliative care can last will vary but it can last many weeks, months or years. For more information please see Scottish Palliative Care Guidelines.

Advance directives, advance decisions or “living wills” These are your written record of wishes about care and treatment you would prefer to have or do not wish to have. Making these decisions can be done by any well person early on in life to plan for what may happen at the end of life. For more information please see our section on Planning your future care.

End of life care usually refers to the last few days of life. It can be difficult to think ahead to this time, but it also may give you peace of mind to know that your thoughts have been put down on paper if you wish.

Coping

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There are many strategies to help you better manage your physical and emotional wellbeing. One small change can have a positive impact in many other ways.

Thoughts: “Oh I’m breathless…. Remind yourself there are strategies you can use to help. Coping strategy: Stop, position yourself, use breathing control and distraction
Behaviours: Watch out for avoidance, and use problem solving and goal setting to help you work out a plan for maintaining a good routine
Physical change: Notice increased breathlessness, or other symptoms. Remind yourself anxiety is a normal response, it is your bodies way of trying to help you in situations which you find difficult or in which you worry about your ability to cope. Remember there are strategies you can practice which help you manage and stay in control of physical change. Coping strategies: Stop, position yourself, use breathing control, distraction, relaxation, pacing.
Emotions: Emotional change is normal, don’t be surprised if you experience a range of emotions related to living with a lung condition. Learning about your lung condition, and how to manage it, will help you in knowing what to do and in practicing the self management strategies that work for you

Remember, anxiety is normal. Practicing coping strategies and introducing one small change can have a positive impact on your wellbeing in many ways.

Other coping strategies

Community fitness class for older people

You may already be using strategies which help you cope, or have found you have no choice but to change your daily routines.

Other people may have given you suggestions to help you to manage your breathing control, symptoms and situations. There are many strategies which may be helpful and we would suggest, if you haven’t already done so, trying out some of the strategies below:

Lifestyle choices

Healthy eating (for more information see our section on Healthy eating for people with COPD).
Exercising in a manageable way using coping strategies during activity (for more information see our section on Pulmonary Rehabilitation).
Avoiding too much tea / coffee / energy and fizzy drinks.
Stopping smoking (for more information see our section on Help to stop smoking).
Limiting your alcohol intake.
Getting enough sleep.
All other activities that help YOU take care of yourself.

Sources of support
If stress and anxiety are causing you major distress and affecting your function and involvement in daily life, your mood, relationships it may be worthwhile speaking to your GP or another health care professional. Other local agencies include:

Key messages

Remember breathlessness related to anxiety is normal. It is your bodies way of trying to help you in situations which you find difficult or in which you worry about your ability to cope.

Explore and understand the triggers for your anxiety. If you find anxiety is becoming a problem which is affecting your day-to-day life. If you think it is affecting routines, or you notice you are worrying more about situations, your health, and your ability to cope, you should contact your GP or speak to someone to seek advice.

There are lots of strategies that can help you cope with stress and anxiety and manage your lung condition.

Learning to recognise and use coping strategies helps you to manage your breathlessness, other symptoms and situations. Self management strategies support both your physical and emotional wellbeing into the longer term.