Will I feel much pain?
Possibly: some people will, others won’t. Pain is not inevitable and not everyone will experience it.
Pain can be controlled using a range of different treatments including pain suppressing medications such as morphine, as well as complementary therapies such as acupuncture.
Let your doctor know if you are in pain. It is helpful to keep a record or diary of when and where you experience pain, the intensity and if it seems to be related to a particular activity, food or medication. This information can really help your care team to successfully treat the pain. Also tell them whether it gets better or worse once treatment is started, or if it moves to a different area or changes in nature.
Will I find it difficult to breathe?
Like pain, breathlessness is not uncommon in the late stages of Parkinson’s but not everyone will experience it. The causes of breathlessness are often physical but can be worsened by anxiety and fear. Finding it hard to breathe is frightening, of course, but try to remain calm as this can alleviate breathing problems.
Treatments range from opiod medications which have a calming and relaxing effect, to being taught relaxation and breathing techniques by a specialist healthcare professional. In severe cases oxygen may be required.
Simple measures such as keeping the room cool and improving the circulation of air, either with a fan or by opening a window, may also help.
Will I have to move to a nursing home or a hospice?
Not unless you want to. If you can be kept comfortable and well cared for at home, then there is no reason to move into a nursing home or hospice unless, of course, you wish to.
Some homes and hospices offer temporary respite care so carers can have a break. It may be worth asking your care team if they can recommend a home offering a short term stay.
If those supporting you at home no longer feel able to do so and your care is compromised, then you may be more comfortable in a home or hospice where specialist care is available. This will depend on your individual circumstances, your needs and the ability of those caring for you.
Can I refuse life-prolonging treatment?
Yes. Before you undergo any medical treatment you or your next-of-kin will be asked to sign a consent form and you have the right to refuse this.
However, if you not in a position to make such a decision, it is important that your doctor and family are already aware of your choices. Let your doctor and family know if you do not wish to receive specific treatment and specify the circumstances in which this refusal would apply. These wishes can be documented in a living will which records any decisions to refuse artificial life support, resuscitation or medication such as antibiotics, even if this hastens death.
Who can help me make the right choices?
Your care team will be able to advise on the best options to suit your own individual needs.
You and your family may also want to talk with a palliative care social worker or a community worker as they will be familiar with the services in your area and can spend time talking with you and weighing up options. They are trained in counselling and can support you in the decision-making process.
Patient associations and a number of voluntary organisations also have trained advisors who can talk with you and guide you - see European and international Parkinson’s organisations - or ask your doctor’s surgery for details of other patient organisations.