It can be upsetting to think about the future when you have advanced cancer. However, many people find it gives them peace of mind to plan for end of life and have medical plans in place and legal and practical matters in order, even though they still hope to live for a long time.
Planning for end of life is useful for everyone, whether they have an illness or not. These are ways for you to lessen decision-making burdens on your family, and for you to know that your wishes will be respected.
You may want to talk to your solicitor about appointing one person to manage your financial affairs on your behalf. The ‘Think ahead’ form allows you to fill in details about:
• Bank accounts;
• Insurance policies – home, property, car etc;
• Life assurance;
• Credit cards;
• Tax affairs;
• Mortgage documents;
• House deeds;
• Other assets; and
• Any debts.
The ‘Think Ahead’ scheme can help you record and register your preferences about what you want if you are very ill or dying. This scheme was devised by the National Council of the Forum on End of Life in Ireland.
The programme gives people control and choice. It can help you be responsible for what happens in the future.
Family members may want to prolong your life at all costs. That may not be what you want. There are lots of care preferences that you can consider:
• How do you feel about your quality of life compared to the length of your life?
• If you are dying, do you want chemotherapy or radiotherapy?
If you are very ill, you are not going to recover and you have very poor quality of life and a lot of suffering, you may feel you want to say ‘thus far and no further’. If you can write down your preferences while you are still able to, it can save a huge amount of conflict, heartache and hassle. If you take part in the ‘Think Ahead’ project, it means you will get the type of care that you want. It can make what is a very difficult time for everyone that bit easier. Planning for end of life can mean that you have some sense of control and choice.
‘Think ahead’ lets you answer questions like:
• Who would you like included in discussions about your medical condition or care?
• Are there cultural preferences or religious beliefs that you would like the healthcare staff to consider in caring for you?
The form lets you say what your care preferences would be if you are so ill that you cannot speak for yourself. It allows you to set out your preferences about medical treatments you do not want to receive in the future in case you cannot speak for yourself. It also allows you to name someone, called a ‘Patient-Designated Healthcare Representative’, who can speak on your behalf.
You should speak to a healthcare professional before completing the form as they may be the best person to give you the information you need when deciding about the care and treatment you would like.
You can print out a free ‘Think ahead’ form to fill in your preferences here.
Hospice Foundation and other palliative services
The Irish Hospice Foundation runs a Hospice Friendly Hospitals Programme to make sure that end of life, palliative and bereavement care are central to the everyday business of hospitals.
The programme aims to improve the standard of end-of-life care in hospitals. More than 40 public and private hospitals are now linked to the programme.
There are seven End-of-Life Coordinators in position in hospitals across the country.
Hospice care aims to improve the lives of people whose illness is no longer curable. It helps them to live as fully as possible to the end. It seeks to relieve the physical symptoms of illness while equally addressing the patient’s emotional and spiritual needs. Hospice care also provides support to families and those who are important to the patient, and extends its reach into bereavement.
Hospice care can be provided in various care settings, such as a hospice, your home, a family member’s home, a hospital or a nursing home.
The terms ‘hospice care’ and ‘palliative care’ are sometimes used interchangeably. Palliative care is the term generally used by those working in the health service.
Palliative Medicine is a recognised medical specialty in Ireland. A doctor specialising in this area is known as a Consultant Physician in Palliative Medicine or Palliative Care Consultant. Specially trained nurses working in hospices or as part of a specialist palliative care team in a hospital or in the community are Clinical Nurse Specialists (CNS) in Palliative Care.
Palliative care aims to improve the quality of life of patients and their families facing the problem associated with life-threatening illness. It does this by preventing and relieving suffering by:
• Identifying problems early;
• Assessing and treating pain; and
• Assessing and treating other problems – physical, psychosocial and spiritual.
Not everyone means the same when they talk about ‘end-of-life care’. The Irish Hospice Foundation uses this term to refer to all aspects of the care provided to a person with a life-limiting illness:
• From the time of diagnosis;
• Through the last months of life; and
• Up to and including the final hours.
Email accounts, social networking profiles and photo sharing are seamlessly integrated into many of our everyday lives. Things like digital music libraries and photo albums may not translate to a euro amount but are certainly valuable so creating a plan for these assets is important. Consider making a password-protected list of your online accounts, that includes all the user identification, passwords, and account numbers. If you choose, you can provide the executor of your will with the instructions on where to obtain your password list and what should be done with it. Alternatively, you can give the list to a family member or friend that you trust and give them instructions on what to do with it. If you are on Facebook, you can pick a beneficiary of your Facebook account. You can set this up in your general Security setting tab under Legacy Contact. This legacy contact will manage your memorialised Facebook account after you have passed away.
If you are very ill or dying you will probably want to organise your legal affairs. To do this you need to think about:
• Making a will;
• Making financial or other provisions for family members; and
• Appointing guardians for children under 18.
You may also wish to appoint an attorney under Enduring Power of Attorney, to make decisions on your behalf if you become unable to do so.
You may want to give your attorney the authority to refuse life-sustaining treatment on your behalf.