16: Palliative Care

PALLIATIVE CARE 16

“Palliative care is NOT about dying. It is all about living.”

What is palliative care?

Palliative care is about improving quality of life for patients and their families. It can be used at any stage of the disease alongside other treatments, or on its own towards the end of life. It provides an extra layer of support for men with cancer. Treatments vary from medication to changes in nutrition (dietary advice), relaxation techniques (such as massages or aromatherapy), alternative therapies such as acupuncture, targeted radiation to help with areas of pain, or radiotherapy to the prostate to help with ongoing bleeding in the urine. The focus is patient-centred holistic care for patients with serious illnesses and their families.

What is end of life care?

Common Questions

1. Can I live without my prostate? End of life is a type of palliative care and is used as patients get close to the end of life. Yes, a man can live without his prostate. What is the aim of palliative care? The whole prostate may be removed for cancer or part of it when it is enlarged and causing symptoms. Palliative care is about care and comfort rather than cure. It is often referred to 2. What conditions other than cancer as symptomatic care. The aims of such care include: can affect the prostate? • • Benign (non-cancerous) enlargement Treat and prevent symptoms of the disease or side effects of treatments, such as pain, nausea, and tiredness called BPH • Prostatitis - infection or inflammation • Addressing a patient’s emotional needs of the prostate. 3. Do biological women have a prostate?• Treating a patient’s physical and social needs • No. Helping a patient with practical needs such as getting to appointments or help with finances 4. How big can the prostate get? There is no real upper limit. • Helping patients with spiritual needs • A small sized prostate has a volume of 30-40ml • A medium sized prostate has a volume • Providing the above for caregivers, families and loved ones of 40-80ml • A large sized prostate has a volume greater than 80ml.

Who is palliative care best for?

• Men who have side-effects of the cancer or its treatments • Men who choose not to have any curative treatments • Men who have had treatment, which has failed and do not want any more treatments • Men who have decided that further treatments will cause more harm than good • Older men who have other conditions that are more likely to cause death than the cancer itself • Men with advanced cancer who want a better quality of life

How can palliative care be used alongside other treatments?

Whilst specialists focus on treating the cancer, palliative care teams work with you to focus on managing side-effects and symptoms, such as: • Help with waterwork symptoms such as weak flow, difficulty starting or stopping urination, or an interrupted stream • Passing urine frequently • Pain on passing urine • Pain in the back or hips • Ongoing blood in the urine • Difficulty with erections • Incontinence due to prostate cancer or after surgery • Tiredness caused by hormone treatment • Difficulty sleeping or anxiety

Who is in the palliative care team?

Much of this type of care is coordinated in the community by your GP but can be initiated by your hospital team. The palliative care team consists of professionals from many different specialties who work together, such as: • GP • District nurse • Palliative care doctors and nurses • Urologists • Oncologists

• Clinical nurse specialists • Community nurses – this includes Macmillan, Marie Curie, community, palliative care, or hospice nurses • Healthcare assistants – trained professionals who may help with washing, dressing, or taking your medication on time • Physiotherapists provide help with movement or mobility problems • Dieticians • Pharmacists • Counsellors who help patients understand and process their emotions after a cancer diagnosis • Social workers – part of local social services who help with non-medical support such as having meals delivered to your home or help with the cost of getting taxis to hospital if you do not drive • Occupational therapists – professionals who focus on your ability to do everyday activities and help with adapting your home or providing equipment such as a wheelchair • Chaplain or spiritual advisors who help with feelings towards death and dying

When does palliative care start?

At any stage that you ask for it, starting at the time of your diagnosis. Palliative care does not always result in death as it can be provided to someone during treatments such as chemotherapy, from which recovery is possible. Palliative care can transition to end of life care if the patient is expected to die soon from the cancer.

When does end of life care begin?

When it is required and can last days, months or years. It is a process, often if your cancer treatments have not worked. This approach to care can be delivered at home or in a facility such as hospice.

Common Questions

1. Can I live without my prostate? Yes, a man can live without his prostate. The whole prostate may be removed for cancer or part of it when it is enlarged and causing symptoms. 2. What conditions other than cancer can affect the prostate? • Benign (non-cancerous) enlargement called BPH • Prostatitis - infection or inflammation of the prostate. 3. Do biological women have a prostate? No. 4. How big can the prostate get? There is no real upper limit. Where is palliative care given? • A small sized prostate has a volume • Hospital • of 30-40ml A medium sized prostate has a volume • Nursing or residential homes of 40-80ml • A large sized prostate has a volume • Outpatient clinics greater than 80ml.

• Home • Hospice

When do I start thinking about end of life care?

• Your cancer is life-threatening • You are having frequent visits to emergency departments with symptoms • Day-to-day living is starting to get uncomfortable • Your cancer treatment has stopped working • Your quality of life has reduced

What do I need to do as I get towards the end of life?

• Start to think about advanced decisions about your future, such as: o What type of care you want in future o What treatments you do not want – for example some people do not want to be on a mechanical ventilator even if you may die by refusing this type of care o Think about whether you would like resuscitation should your heart stop o Who you want to make decisions about your care if you are unable to do so, such as if you are drowsy or unconscious towards the end o Where you would like to be cared for o Where you would like to die o Your funeral wishes – a burial or a cremation? What music? o What religious beliefs need to be considered o Communicate your thoughts and decisions to loved ones and your specialists • You cannot ask for help to end your life in the UK as your disease progresses • Think about your finances and communicate this to a loved one • Make sure your family knows where to find house deeds, your passport, and insurance details • Does your family know where to find details of gas, electricity, water, phone suppliers and contracts? • Where are your passwords kept and who do you want to know this information? • Make a will • Think about writing everything down

• Communicate your decision about organ donation to your loved ones – even if your organs cannot be used, tissues and corneal donation can be possible in most cases • Think about donating your body to medical teaching or research

Common Questions

Is palliative care only available at the end of life?

No. It can be available at any age and at any stage of the disease, even when the cancer is curable. However, most men tend to focus on palliative care and quality of life as their cancer advances

Does palliative care mean I am dying?

No. It can mean that the disease has a limited prognosis, but you can have palliative care for many months or years. This is not the same as end of life care

Does palliative care mean other treatments for my cancer will stop?

No, Palliative care can work alongside other treatments such as radiotherapy or chemotherapy

Can I receive treatments to cure my cancer with palliative care?

Yes, if you wish with palliative care. However, with end of life care, only symptom relief will be provided

iDame Cicely Saunders founded the first modern hospice in London in 1967, starting a move to focus on a dignified end of life for all.