Tracheostomy and Palliative Care

As primary health carers working with patients and families during the palliative care process, the main goal is to support them in making the best decisions going forward, assist them in getting the additional care they may need at home and guide them along the way of a loved one’s final journey. There is often uncertainty among family members about whether treatments and advanced care treatment options should be considered at the end of life process.

Recent studies from United States of America and Europe found that 75 % of people want to die at home, if given a choice. The reality is however, that currently less than 25 % actually do die at home. Death is a very private matter and it should be in an environment where you feel most comfortable. As such if your loved one faces their end of life in ICU and is requiring mechanical ventilation (with tracheostomy) and wishes to die in a peaceful and harmonic environment at home with peace of mind, away from a busy, noisy, sterile and environment, then that can be achieved with the right planning and supports in place.

Advanced Care Plans and Advanced Healthcare Directives for forward planning are used in Ireland, United Kingdom and the United States of America. Advanced Care Plans are documents that are put in place to let others know your overall wishes and preferences about your end of life care. This care plan should focus on your present wishes for the care you want to receive in the future. You should take some time to think about how and where you want to be cared for, and what you want to happen. Making your wishes known now makes it easier for family to advocate on your behalf.

An Advance Healthcare Directive is a document that is legally recognized in Ireland, UK and USA where you set out your wishes about medical treatment you want to refuse or request in case you are unable to make these decisions in the future ie. Tracheostomy insertion. It informs family, friends and doctors of your wishes for your treatment in the event you can no longer communicate them yourself. It’s a legally binding document where you write down what healthcare treatments you wouldn’t like in the future. You may also write what treatments you would like to receive too but that is not legally binding.

Unfortunately, Advance Care Planning and Advanced Healthcare Directives aren’t often in place with minors. Nurses, doctors, and parents all report difficulty in engaging in such discussions, for profound emotional reasons. In one study, nearly half of the adolescent subjects with serious illness hadn’t discussed issues such as dying at home (Behrman, 2003).  Hopefully additional emphasis on adolescent care planning and age-specific tools will improve the situation. One such tool is an adaptation of the well-known Five Wishes document called My Thoughts, My Wishes, My Voice, which allows adolescents and young adults to answer the questions.(https://fivewishes.org/five-wishes/individuals-families/individuals-and-families/children-and-adolescents)

This is a very complex question, and in the context of advance care planning it is important not to make any promises that one isn’t able to keep. But even if one cannot promise to honor an adolescent’s precise treatment requests, this does not mean that the values and goals expressed are not meaningful or influential. One might say that an adolescent’s advance statements carry ‘‘moral weight,” even if they are not legally binding.

Institutional, social, and financial considerations may affect decisions related to tracheostomy, as implicit bias regarding quality of life. The complexity of such care and decisions highlight the need for optimal palliative care throughout the patient’s life. Whereas in decades past children with complex medical needs would have led to a child’s death, now there are multiple modalities of support that can sustain life, beginning with suctioning and cough assist, progressing to intermittent and then chronic noninvasive positive pressure ventilation, and ultimately invasive ventilation. A tracheostomy is sometimes recommended to ensure comfort and reduce the risk of complications. While respiratory decline can be postponed through such interventions, it cannot always be prevented. The motivation for proceeding to tracheostomy should be thoughtfully considered.

With the right supports in place, tracheostomy care at home can provide the opportunity for patients and Families to stop visiting the ICU. Advanced Homecare can be specifically tailored to help give back valuable and precious time that patients and families can have at home, rather than in a busy and noisy environment in a hospital. There is often a fear of the use of tracheostomies at the end of life stages. Fears such as, would it postpone, or even eliminate, the ability to create the peaceful and tranquil end of life process.