Maxfacts

In this section we address the practical applications of end of life care with an emphasis on oral and facial malignant disease as this is the most likely condition to result in end of life within the maxillofacial area.

Advanced care planning - this would be done (in the UK) with your district nurse and GP; this is a formal document that is shared with any health professional who supports or cares for you.

It is important to understand that this is a document that can be changed as things change for you but it ensures your wishes are known in advance and made at a time when you are in a position to make vital and valid decisions for yourself.

Considerations for advanced care planning

Some of the things considered in the planning include:

• Where do you wish to die - at home, hospice, nursing home or hospital? Making an advance decision on whether or not you wish personnel to attempt cardiopulmonary resuscitation (DNACPR) in the event of your heart suddenly stopping is a crucial part of this. DNACPR is not a one off absolute, this is reviewed regularly with you and requires YOURS and your GPs consent, NOT your family’s decision on your behalf (previously a family member has been able to make this decision. This is no longer the legal position in the UK).
• Planning for medical emergencies - this involves DNACPR but also involves sharing with you any medical complications that may be likely due to your cancer (in the maxillofacial surgery domain, cancer is the only condition applicable to palliative care). Infection – would you want aggressive treatment which may need hospital admission for intravenous application of antibiotics or to be made comfortable at home without more aggressive, hospital-based treatment. This may mean the infection results in your death. For example, a cold may become pneumonia, if not treated in hospital you may die from the pneumonia. Other medical emergencies specific to maxillofacial malignancies are life-threatening bleeds such as from the carotid artery in your neck which may bleed as a consequence of the cancer. This is known as a ‘carotid blow out’. There are techniques to manage this at home if this is a possible scenario for you.
• Decisions around medication choices (in UK this is known as anticipatory medication) - the aim of this is that your medical team and family have available emergency pain relief and any necessary sedation, should your condition suddenly deteriorate. This medication can prevent you being admitted to an acute hospital if your wish is to be cared for at home, including in the event of another illness that may end your life. Common anticipatory medications include: diamorphine (analgesia), midazolam (sedative), haloperidol (anti-anxiety and relaxation agent), hyoscine butylbromide (to dry up secretions as a person’s breathing in the last few days and hours of life can sound like a ‘death rattle’; the person themselves knows nothing about it but it can be distressing to loved ones to hear), antiemetics (metoclopramide, cyclizine, levomepromazine).
• Conversations with your family regarding your wishes - their wishes and any concerns anyone has should be openly discussed and a care plan made. It is not uncommon for the person who is dying to have to support their loved ones and friends. The relatives/loved ones can find it too difficult to talk about death and dying and may require ‘permission’ to be sad and upset. The relatives may try to bolster their loved one along with unrealistic hope and this can lead to failure to resolve important end of life issues and the wishes of the person who is dying. This also includes the dying person’s wishes for their family and loved ones for the future. If someone at the end of life has children or grand-children they may wish to make memory boxes for them or with them. There are many children’s charities who will support children through the experience of family members having cancer and also offer bereavement support. It is important where you can, to be honest with children as this can affect their perception of death in later life.
• Other considerations – may be ‘putting your house in order’, financial considerations, any funeral arrangements. Ensure your will is made and accurate, up to date and reflects your wishes.

Make sure you have all the telephone numbers for everyone involved in your care both in and out of working hours. These might include: GP, district nurse, palliative care team, religious leader – each person has a different belief system which can be vastly different with respect to end of life.

• Other advanced care planning decisions specific to head and neck malignancies - could be a discussion around stopping tube feeding whether nasogastric or gastrostomy feeding is in place. People worry that withdrawing food causes someone to ‘starve to death’. Whilst this may seem a rational thought, when someone is near to death forcibly feeding someone by tube often causes fluid to be stored in the body resulting in breathlessness, leg and abdomen swelling, nausea and vomiting and significant discomfort (if they were behaving naturally, they would have stopped eating at this point). It is important to know that the dying person will not feel thirsty or hungry, and it is okay to have the conversation about tube feeding. This is done for the comfort of the involved person. Should someone not be managing food for the reasons above but be thirsty, they would be given good oral hygiene and subcutaneous fluids (with a tiny needle under the skin of the arm).
• Clinical symptoms – pain relief in particular; it is a common misbelief that people die in pain, modern pain relief is highly effective. In head and neck malignancies, due to swallowing difficulties it is not uncommon to use pain medication in transdermal (patches), liquid or subcutaneous delivery systems such as a 24 hour syringe pump.
• Clinical symptoms - fungating and/or infected wounds (see emergencies above); one of the biggest concerns for patient and family alike can be the odour of these wounds. This is easily treatable with specific dressings (charcoal- or silver-coated) and topical antibacterial agents, particularly anaerobicidal agents.
• Understanding what is important about pain at the end of life – it is not uncommon for the person with a terminal cancer to want to maintain control and understand what the cancer is doing. This can mean that the person does not want full pain control as they have a sense that they want to know if the cancer is growing or not, and feel that if they have complete analgesia they will not know what the cancer is doing and therefore choose to live with some level of pain and a sense of control rather than give up that sense of control in obtaining complete pain relief. It is important to understand the rationale behind these choices and that they may change on a day by day or hour by hour basis.
• Emotional pain and physical pain - when assessing someone’s pain, people can often describe where it is and what it feels like. Examples would be: a nerve pain is described as sharp, shooting, electric shock, hot. A bone pain can be a dull, gnawing, ache that can be precisely located. It is not uncommon to have several different types of pain and to, therefore, require several different types of pain relief because of the different types of pain experienced as some forms of analgesia are better suited to some forms of pain. These are ‘physical pains. Pain described as ‘all over, ‘everywhere’ or ‘all the time’ are more consistent with emotional pain which requires a different approach based around psychological techniques. A well-intended but blind approach using a battery of conventional analgesics that would work for ‘physical pain’ can be counterproductive in this regard.

As always, each person and each condition are individual and at this extremely important time of your life the input of the professionals who are caring for you is vital.