Oxygen, painkillers, procedural anxiety and hospice care
‘Ask the experts’ runs every quarter in Emphasis, the PHA UK’s member magazine. If you’ve got a question you’d like answering, please email email@example.com.
“My wife has been told she would benefit from hospice services, but I didn’t think she was that bad. It’s making us all panic that things are worse than we thought. What can we expect?”
Paul Sephton, Research and Development Coordinator at the PHA UK and former clinical nurse specialist in PH, says:
There is a common misconception that hospice care is only for people who are dying, but this is very far from the truth.
Hospice care (a form of ‘palliative’ care) is for anyone with a life-limiting illness, but there is no timeframe on that. Being referred for hospice care does not always mean you are close to the end of life.
With a focus on quality of life, hospices offer many services, including ‘day’ services focused on wellbeing – which can include complementary therapies like massage, arts and crafts activities, and support groups. Remote/online services have taken place at many hospices throughout the pandemic.
Counselling services are usually available too, and family members can also benefit from this support.
Some people access hospice support for years, often in stints, and it can be reassuring to know it’s there when you need it.
Services vary between hospices, but once your wife has been referred you will be able to have an informal chat with the staff there to find out what’s available and make a decision about whether it’s right for you.
Before becoming a specialist nurse in PH, I spent many years as a nurse within a hospice. People were consistently surprised by how uplifting and positive the environment was and I would encourage you to keep an open mind.
“I’ve been told I might need to start oxygen therapy soon, but I’m concerned about how this might affect my life and what I can do or where I can go. What should I expect?”
Rachel Crackett, Clinical Nurse Specialist in PH at the Freeman Hospital in Newcastle, says:
You will probably have to undergo an oxygen assessment to find out how much oxygen you will require and how long you will need to use it for.
Some people only need ‘ambulatory oxygen’ which means you only need to use it to exercise and undergo activities. Should this apply to you, then small portable cylinders can be used for this purpose. These are usually carried like a backpack, but some people do find them heavy, so a little trolley is often a good idea.
If you require long-term oxygen, then a concentrator will be needed in the home to provide the amount you need. The oxygen company in your area will provide full education for use and the safety measures that you need to adhere to, for example, not smoking. The concentrator can be large and a little noisy so be mindful about which room you choose for installation.
Oxygen shouldn’t stop you from doing what you want to do (other than perhaps swimming). You can take your portable cylinders with you, but you will need to be mindful of how long they last, and this will depend on how much you are prescribed (obviously the lower the rate, the longer the cylinder will last.)
You can go on holiday with oxygen, however, there are some logistics you will need to sort out. It is much easier to holiday in the UK than going abroad.
Ultimately, while it can be a little daunting to be prescribed oxygen and you might feel limited, most situations can be overcome with a degree of forward planning.
“I get a lot of headaches, but I’m not sure what painkillers I’m able to take. Do they interact with PH medication? I’ve not been diagnosed long so I’m a bit nervous about taking other drugs.”
Duncan Grady, Highly Specialist Pharmacist for Pulmonary Vascular Diseases at the Royal Papworth Hospital, says:
Most people will experience a headache at some point in their lives – they are very common and are usually not serious.
There are over 150 different types of headaches – each with its own cluster of symptoms, causes and treatments.
One of the most common types of headaches is a tension headache. This is usually described as a dull pain or pressure around the head and back of the neck and can be triggered by things such as stress, poor posture, dehydration or lack of sleep.
Headaches can usually be effectively treated with simple painkillers. Paracetamol is a great choice because it does not interact with any PH medicines, is widely available and is very safe so long as you keep within the recommended dose. Ibuprofen also does not interact with targeted PH medicines, but it may interact with other medicines you are taking (in particular medicines to prevent blood clots) and some people with certain health conditions should avoid it so check with a pharmacist first.
Drug-free ways to help headaches include rest and relaxation and drinking plenty of water. For tension headaches, some people find a gentle neck massage or a warm compress to the back of the neck and head helpful. Most importantly however, if your headaches do not resolve despite treatment, you are getting headaches frequently, or if they are much more painful than usual then please seek medical advice.
As a footnote: Headaches can also be a side effect of medicines, including the specialist medicines used to treat pulmonary hypertension. However, only an unlucky minority of patients ever get any and they are almost always temporary and usually respond well to paracetamol treatment. Nevertheless, if you are getting regular headaches for more than a couple of weeks after starting a PH medicine then talk to your PH team – you might need a dose or treatment change.
“I get really worried and worked up before any kind of medical procedure. Is this normal? Is there anything I can do about it?”
Dr Gregg Rawlings, Trainee Psychologist at the University of Sheffield, says:
Anxiety is a subjective experience, meaning how anxiety is experienced and what triggers it, will vary from person to person.
Medical appointments and procedures can trigger our anxiety response and therefore it is very common for people to experience some degree of anxiety. It even has a name, procedural anxiety.
The good news is, there are lots of ways to help manage anxiety in response to medical procedures.
Coping strategies for dealing with general anxiety can be very helpful, such as relaxation, slow breathing, mindfulness, distracting yourself from unhelpful thoughts and sharing your worries with others.
Planning can also be a good idea; for example, knowing in advance how to get to your appointment on time, packing your bag beforehand so you don’t feel rushed on the day and writing down questions you may have so you don’t forget them. Try not to over-plan though, because this can also be unhelpful and add to your worry.
If you feel you are struggling with anxiety around medical procedures, please share your concerns with members of your care team. Although such conversations can be difficult at first, in the long term they will allow you and your care team to work together to help better manage your anxiety.