Palliative Care Services
Palliative Care Services in Ireland can support the primary care team and hospital teams in responding to complex symptoms – and provide advice about interventions that will maximise the quality of life of the individual with a life-limiting disease. Depending on the stage of the disease, this approach is often introduced alongside existing treatments that a patient receives to maximise their independence.
Specialist Palliative care services are provided by the HSE in partnership with voluntary service providers, and these teams work in community settings, acute hospitals and within specialist inpatient units (hospices). Referral to the Specialist Palliative Care team is made by the medical team or GP.
Traditionally specialist palliative care services developed around the needs of people with cancer, however increasingly these services are responding to those with other life-limiting diseases – including those with MS, who have complex symptoms that cannot be routinely managed by their own specialist or GP. Your local GP, Primary care Team or MS Regional Worker will be able to guide you if this is an area you would like to explore this further. The Irish Hospice Foundation’s Palliative Care for All Programme is currently exploring how palliative care can be extended to everyone who needs it, regardless of the nature of their illness.
As MS progresses, it can be frightening to see your loved one’s abilities change. It is important to talk with your loved one about the kinds of medical care that he/she wants to receive, particularly if MS continues to progress. Talking about this is difficult, but it is crucial if you want to ensure that the wishes of the person with MS are followed in case he/ she can’t communicate those wishes in the future.
The choice belongs to the person who has the illness. Modern medical ethics supports the right of each individual to make his or her own medical decisions within the confines of Irish legislation.
As to cause of death for people with MS, many die of complications related to their disease. However, many also die from issues such as cardiac and vascular disease as well. As more patients with MS survive to older ages, a greater proportion can be expected to die of causes unrelated to MS. It is not unusual for families to uncover conflicts during this process of decision making, as it can trigger strong emotions and unresolved issues. Remember, it is acceptable to agree to disagree.
Often those who are more comfortable with mortality issues can be found on one side and family members who are hoping for a cure and don’t want to talk about end-of-life are on the other. If you know of someone who is skilled in facilitation, invite him or her to the table to help the conversation
There are many questions that can arise as the end of life approaches. It is important to think about choices that may need to be made. Family members need to be clear on all of these issues:
- Hospital or no hospital
- Intubation/ventilator or not (this is different from CPR)
- Antibiotics or not
- Continued nutrition or not (this can be complicated if a feeding tube is already in place)
- Do not resuscitate
Decisions revolve around how aggressive medical treatment and management should be. There is no right or wrong answer. It is a matter of personal preference, values, and quality of life. Opinions and thoughts of the same person might differ over time as well, particularly if a critical hospital emergency occurs, so it is important to revisit these medical discussions periodically. See this website for more information on Advanced Healthcare Directives
Because of its focus on quality of life the palliative approach to care is appropriate throughout the journey of those with MS and not just at the end of the life.
For a person with MS, palliative care might include pain relief, the management of swallowing difficulties, or prevention of pressure sores. It could also involve supporting the person to plan ahead and make the most of their life, finding ways to participate and get fulfilment form activities of interest and maintain relationships. Health care professionals are increasingly recognizing the importance of adopting a palliative approach to care of people with MS, and also availing of the advice and support of the specialist palliative care team for symptoms that are complex.
Palliative care can be utilised as a complement to MS comprehensive care; ideally both can be provided in an integrated way to enhance the care that each can offer the person with complex or challenging symptoms and help them plan for their future.
The palliative approach also provides support to families and/or those who are important to the patient, and extends its reach into bereavement. This holistic approach to care should integrated into the routine care of those with life limiting diseases and available in all care settings – i.e. people’s homes, a hospital or a residential care setting, as well as the actual hospice building.
There is no question that it is not always easy to identify a terminal phase of MS, even if someone has been confined to bed with significant health issues for a long time. However, if your loved one is clinically compromised and coping with significant respiratory weakness, UTI infections leading to sepsis, critical nutritional impairment, or other life threatening complications, you might look into hospice as a potential support for you. Although there is no definitive check-list that end of life is near, these might be triggers for seeking hospice support:
- Multiple ICU admissions with shorter periods of stability
- Hospitalisations that result in infections
- Significant changes in cognitive/functional status
- Respiratory insufficiency
- Critical nutritional impairment
- Stage 4 pressure sores