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 disease – 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.
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:
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:
Issue 4 is out now! MS Research is a bi-annual research eZine. In each edition we will be sharing the latest updates from scientific and social MS research, from here in Ireland and internationally. In this issue Research prioritisation survey results Research event reports Causes of MS Biotin Physiotherapy Psychology Stem cells Myelin repair ECTRIMS And so much more…. Get in touch Contact Harriet Doig, Information, Advocacy and Research Officer: email firstname.lastname@example.org or call (01) 6781600
New international research published into treatment expectations of people with MS New international research finds that people living with MS prioritise slowing disease progression when considering treatment choices. People with MS want therapies that reduce the number of relapses they suffer and to achieve better control of symptoms like fatigue and pain. The TaP-MS survey, published on 8th December, gathered over 1,000 responses from people with MS in countries ranging from the US, Canada and Australia to Sweden, Germany, France and the UK. It found that as well as seeking to stop disease progression people with MS want more vitality and energy. A new University College London School of Pharmacy report (Greater Expectations: the Future Hopes of People with Multiple Sclerosis, also published last week) highlights the value of early diagnosis and universal access to medicines that people with MS and their doctors judge are most likely to benefit them. It stresses the need for personalised combinations of medical, pharmaceutical, nursing, psychological, social and economic support for people with MS and calls for regular auditing of care delivery standards. Greater Expectations argues that current economic evaluation methods can under-estimate the true value of better MS treatments. Fears about the affordability of high quality health and social care can also be exaggerated. The UCL School of Pharmacy report in addition points to the potential for MS prevention programmes aimed at reducing vitamin D deficiency related risks and cutting smoking and obesity rates amongst teenagers. However, providing disease modifying treatments and investing in ongoing biomedical research are central to further reducing MS related harm. Greater Expectations’ recommendations include: Governments throughout Europe should publicly commit to providing everyone with MS with the treatments that they, their neurologists and other professional advisers judge will offer them maximum benefit; There ought to be open access to reliable, up-to-date, figures on all forms of MS DMT use on a country by country and locality basis; Care funders should provide adequate facilities for the early identification of MS and monitoring treatment outcomes. This includes assuring good access to neurologists and to MRI scanning (Ireland has the lowest number of neurologists per heard in Europe and long waiting times to access MRI) as well as maintaining high quality disease registries; People with MS and organisations representing them have a vital part to play in raising MS care standards, preventing access inequalities and contributing to pharmaceutical literacy Download TaP-MS (Treatment Expectations and Priorities of People with MS) survey Download Greater Expectations: the Future Hopes of People with Multiple Sclerosis Further reading MS Ireland's Time to Act report on the importance of early diagnosis and treatment in MS MS Treatment Decisions - MS Ireland’s guide to making informed decisions about MS treatment options
Many people with multiple sclerosis experience falls, which can have significant consequences for the individual. The MS Research Team at the University of Limerick, led by Professor Susan Coote, have developed a falls prevention programme for people with multiple sclerosis and we would like to assess how suitable and effective the programme is. What do I have to do? The 'Better Balance' programme consists of 12 weeks of twice-weekly classes run by a chartered physiotherapist. The classes will consist of 45 minutes of exercises aimed at improving balance, strength and walking and 45 minutes of education on topics such as fear of falling, task analysis, getting up from the floor, what devices can assist you – these will include group discussions and problem solving. There will also be a home exercise programme provided to each participant. The classes will take place in Limerick and Galway and will be offered in the morning and/or evening depending on the preference of the individuals attending. Beginning in January, interested individuals will be asked to attend an assessment day where a chartered physiotherapist will test your strength, balance, walking and feelings about falls. We will then give you falls diaries to complete for two months. This is like a calendar where you will write down if you had a fall. After these two months, the classes will begin. When the 12 weeks of classes are finished you will again have your strength, balance, walking and feelings about falls assessed and complete another two months of falls diaries to see if the intervention has been successful. After completing the two months of falls diaries you will attend one last assessment with the researcher to assess your strength, balance, walking and feelings about falls. Who can participate? To be eligible to take part you must have multiple sclerosis, be over the age of 18 years, have experienced a fall in the last three months, and be able to walk for 10 metres with or without a walking aid (one stick or one crutch). Get in touch If you would be interested in taking part in this study or have any further questions about the study you can contact the researchers by calling Laura Comber on 086 0231335 or email Laura.email@example.com or Prof. Susan Coote on (061) 234278 or email firstname.lastname@example.org
Letter to Minister Simon Harris regarding ocrelizumab Today, (Monday, 11th December) MS Ireland have written to Minister for Health Simon Harris regarding new medication ocrelizumab, which is the first ever medication to be indicated for primary progressive MS. MS Ireland are asking the Minister to take action to ensure that this medication is made available to people with MS in Ireland as soon as possible. Further reading Download letter to Minister Simon Harris. Information about ocrelizumab Get in touch Questions or comments regarding this letter can be directed to Harriet Doig, Information, Advocacy and Research Officer – email@example.com
Irish life sciences company, Genomics Medicine Ireland (GMI) have announced an important scientific research study aimed at unlocking the mystery of the genetic and lifestyle factors that contribute to MS. Volunteers with MS currently being treated at St. Vincent’s University Hospital, Tallaght Hospital, Cork University Hospital or Altnagelvin Hospital in Derry are invited to participate in the study which aims to identify these factors in order to find better treatments, diagnoses and, ultimately, a cure for MS. GMI also hopes to rollout additional study sites around the country in future. MS Ireland welcomes this exciting new study as an opportunity to further understand the causes and mechanisms of MS, which will hopefully lead to better management and treatment of the disease in the future. Further information on the study is available in the third issue of our research eZine, Interested volunteers should speak with their clinical team at one of the current research sites for more information. Further information: Read the full press release from Genomics Medicine Ireland RTE News
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