Complex care 1

Delivery of Complex Care (Motor Neuron Disease)

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Delivery of Complex Care (Motor Neuron Disease)

Motor Neuron Disease (MND) is a rare condition that slowly and progressively causes

damage to the nervous system. The needs of a person with the condition are very complex, and

specialized treatment is needed and varies from person to person. A person diagnosed with MND

becomes weaker with time, and other symptoms may include a weak grip, slurred speech, and

muscle cramps and twitches. There is no cure for the condition, and existing `treatment helps

reduce the impacts of the symptoms on the afflicted individual's life. A person with MND

requires care from a team of specialists and a general practitioner that offer treatment options

such as occupational therapy and highly specialized clinics with a specialist nurse to help make

everyday tasks easier. Because of the complex care involved, a wide range of contemporary

literature suggests different management care plans and interventions from evidence-based

practices related to MND.

Managing Symptoms

There are many pharmacological treatments for MND, and it is crucial for the patient to

consult their doctors and other specialized healthcare professionals on the best treatment

regimen. A person with the disease should consider seeking treatment options that could provide

a relief for muscle problems and communicate with healthcare professionals if there are any

difficulties swallowing medication (Kumar, 2019; Arora and Khan, 2022; Åkerblom et al., 2020,

p.2134). Communicating all the difficulties a person faces while taking MND treatment is crucial

because each patient has different needs and preferences. Leaving the doctor to make treatment

recommendations with little information can cause complications. The patient should consider

quinine as the primary treatment for muscle camps, with baclofen being an alternative (Brennan
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et al., 2022, p.331; Harvey, 2020, p.34; Verschueren et al., 2021, p. 695; Everett et al., 2020,

p.846; Orrell and Guiloff, 2020, p.608). A person with the condition should insist on reviewing

treatments for muscle problems when a multidisciplinary team is assessing and enquiring if there

are any adverse side effects.

Although MND affects major nervous system functions, its effects can be slowed down

by combining medication and exercise programs. A person with the disease should engage in

physical training exercises to counteract developing stiffness and discomfort, prevent

contractures, maintain as much joint movement as possible, and optimize allow a person to do

simple tasks (Buscemi et al., 2019; Cheng et al., 2018, p.327; Ramdharry et al., 2021; Ammar,

2018, p.2591). The exercises will yield positive results when the patient discusses with a health

professional the best program after considering preferences, abilities, and needs. If the patient

has family members or caregivers that can gain basic training to help with the exercise program,

the program's objective will be realized sooner. The patient may need orthoses to reduce

development of muscle problems (Mahmood et al., 2021, p.102515; Sprosonet al., 2021, p.43;

Shing et al., 2021, p.117361; Yamakawa et al., 2022). Regular training sessions should help the

patient reduce the disease's rapid development and relieve muscle pains.

The patient will likely develop saliva problems as the MND continues to advance and

may need the help of healthcare professionals for a solution. The best course of action when the

problem starts to materialize, the best course of action is to visit a specialized clinic and assess

the patient’s volume and thickness of the saliva (James et al., 2022; Dziewas et al., 2021, p.13;

Güvenç 2018). While at the clinic, the patient may also ask specialized practitioners to assess

respiratory functions, oral care, posture, diet, and swallowing. There may be more than one

problem, and it is important to get checked on the possible impacts of saliva problems. The
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problem with the tests is that they make MND management expensive and may lead to financial

burdens. However, a serious condition such as MND requires financial and psychological effort

to realize a positive outcome.

Nutrition and Gastronomy

Nutrition of the person with MND is crucial in extending their life and helping manage

the advancement of the disease. The patient should always take a healthy diet, hydrate often,

keep a healthy weight, and improve oral health (Coates et al., 2021; Zarotti et al., 2019, p.957;

Alves et al., 2018, p.7). Observing such nutrition needs is important for the patient and can be

too complicated and demanding to the point where a patient is overwhelmed. For instance, the

patient will be required to assess report loss of appetite and feeling thirsty all the time, take

nutritional supplements as required by a nutritionist, and balance their food and water intake

versus the prescribed hydration and nutritional requirements (Halliday et al., 2021, p.352;

Russell et al., 2021, p.1577).Keeping track of so many nutritional variables can be tiresome, and

the patient might lose interest and continue living a simple lifestyle as they did before being

diagnosed with MND. As such, it is crucial for the patient to always seek the input of the

multidisciplinary team to learn about the kind of diet a person with MND should take and seek

additional support or intervention as suggested by nutritionists.

Sometimes, swallowing can be a problem as the nervous systems continue to deteriorate

as the MND progresses. When the patients have trouble swallowing, they can arrange for a

clinical assessment to find out how the patient can eat comfortably and if there is any need for

the use of medication or other interventions (Brandão et al., 2019, p.546; Lisiecka et al., 2021,

p.461; Rugaitienė et al., 2022, p.647). Some factors that should be managed when a person has
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trouble swallowing include seating, positioning, fear of choking on food, psychological

considerations such as wanting to drink and eat independently in public spaces, and respiratory

problems. If the swallowing problem is severe, the patient should consider gastronomy and

inquire about the possible risks of late gastronomy (Labra et al., 2020; Yuan et al., 2020). The

decision to use gastronomy should be the patient's and should be made on their behalf if they

cannot make the decision themselves.

Communication

A person with MND may have trouble communicating since the disease causes weakness

in the lips, tongue, chest, and vocal cords, making speech slurred, unclear, or faint (Paynter et al.,

2019, p.1183; Paynter et al., 2022). Communication can be difficult because overall body

weakness will affect facial expressions and gestures (Paynter et al., 2020, p.3). As such, the

patient with the disease should seek the help of specialized healthcare professionals for

assessment carried out through direct and remote communication. If there are communication

problems detected by the speech and language expert, the patient might consider using

Alternative or Augmentative Communication (AAC) equipment (Linse et al., 2019, p.603). A

person with MND may find using assistive technology to communicate complicated if they are

impatient with learning how to communicate via a new channel. Patients who want to learn how

to communicate effectively with minimal to no input can use complex high-technology AAC

equipment, such as technology that tracks eye movement (Cave and Bloch, 2021, p.118).

However, complex AAC technologies require a lot of money, and they are unnecessary if the

patient and their family cannot afford such technologies.

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When a patient with MND is unsure about using the latest AAC technology, they can

involve healthcare professionals for their input. Occupational therapists can help the patient

choose AAC tools that can work easily with other technologies such as Internet of Thing (IOT)

and personal computers to offer more assistance to the patient with limited mobility (Howells et

al., 2019. P.6). Although the technology that ensures that the patient maintains their needed

quality of life is expensive, it is crucial for the MND patient to feel as comfortable as possible in

their end of life. The patient should seek the involvement of healthcare professionals when they

feel that the AAC system they are using is not meeting their needs (Geronimo and Simmons,

2020, p.61). When new technology is recommended, the MND patient should be trained how to

use the technology effectively and other communication strategies. Training is always necessary

for the MND to determine whether the suggested AAC equipment will help them carry out their

daily activities without becoming a burden to others.

Respiratory Function and Symptoms

Patients with MND should closely monitor their respiratory health, which is threatened

more as the patient’s nervous system worsens. The patient with MND should always seek

medical attention for any slight respiratory problems to be treated for worsening respiratory

impairment before they become more serious and life-threatening (Lau et al., 2018, p.594;

Fiorentino et al., 2022). People with MND in the early stages may fail to realize the importance

of seeking medical attention, and the reversible causes, such as respiratory tract infections, may

turn out deadlier. When left untreated, respiratory functions can be severally affected, and the

patient may end up using non-invasive ventilation as the best option when the respiratory system

is severely damaged (Walsh and Murphy, 2020, p.53). Considering all the associated burdens of

the MND, respiratory impairment can easily be treated, and avoid using non-invasive ventilation
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as part of the treatment. After consulting with the multidisciplinary team and the respiratory

ventilation service, the patient will be the ultimate decision maker.

There are pharmacological remedies for the patient with MND to fix breathing problems

associated with the disease. The patient may be presenting with symptoms of breathlessness and

can be prescribed opioids to help manage the effects of the disease (Fiorentino et al., 2022; Rose,

2018). The patient must consider their levels of difficulty swallowing and may seek help from

healthcare practitioners to find alternative medicine as well as the cost of changing treatment

methods. If the breathlessness is caused by anxiety, benzodiazepines might provide much-needed

relief. Some findings suggest that people not in non-invasive ventilation but continue witnessing

worsening respiratory impairment should use non-invasive ventilators (Walsh et al., 2021).

Considering that the respiratory system is very critical, the patient should try the most effective

treatment method to ensure that they can breathe easily and not succumb to respiratory problems.

Cough Effectiveness

Coughing can be a real challenge to people with MND because the associated weakness

and lack of effective cough can lead to breathing problems or serious illnesses. Luckily, the

patient with MND can seek medical attention when coughing becomes difficult and use cough

augmentation techniques such as manually assisted cough (Sheers et al., 2019, p.514). Usually,

the first-line treatments for the patient having ineffective cough include manually assisted cough

or unassisted breath stacking (Cleary et al., 2021, p. 679). Since each case of MND is different,

the patient should seek treatments for ineffective cough depending on their needs and

preferences. As such, the healthcare professional will determine the exact device to be used after

carefully reviewing all the symptoms the patient presents.

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Planning For End of Life

The person with MND should seek relevant information about what a typical patient with

the disease should expect to find of they have any preferences and concerns. During the

consultation session, the patient can ask about the treatment they might expect as the diseases

progresses, how their health will deteriorate, and the risks of every procedure (Wilson et al.,

2022, p.1162). During the consultation meeting, the patient can learn information such as what

medical contingencies such as having anticipatory medication at home should be arranged

according to the experiences of other patients and healthcare professionals (Wilson et al., 2022,

p.1162). The patient should also inquire when is the best time to involve help from specialized

healthcare professionals and who should make medical or financial decisions on their. The MND

patient should plan how every medical decision will be made and how it will be made so that

their decisions can be respected when they have difficulties communicating and their cognitive

ability has deteriorated.

Psychological and Social Care Support

People living with MND are required to understand the nature and the extent of

psychological and emotional impact of the disease to find out whether they need psychological

care and support. The patient should learn about MND and how it will affect their life after

making a diagnosis. A lot of information during the disease onset will be crucial in adjusting to

cognitive and physical changes, accepting and coping, including fears and how they feel about

dying (Hargreaves, 2018, p.9709). The information will also be crucial in patients' dealing with

their new reality, the fading energy to do any work and engage in activities they love, among
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others. The patient can also inquire about how to find psychological and emotional support from

other people with the same illness and their family members.

The patient may also want to include members of their family in the treatment process

who will be useful when the MND starts to progress to the end stages. Involving family members

will ensure that patients can access online forums, psychology services, and social groups when

their mobility becomes limited (Oliver, 2019). Family members who understand the importance

of emotional and psychological support will do everything to ensure that they provide the needed

care when complex disabilities start to manifest. The caregivers will be provided with

information that will be crucial in taking care of the MND patient when they start developing

communication problems and have difficulty accessing call centers (Hargreaves, 2018, p.9709).

Family caregivers should be at the center of the intervention plan because the MND patient will

soon need help when they start having problems communicating, moving, eating, and performing

other daily tasks.

Telehealth

Currently, telehealth allows a person with MND to access better health services almost

instantly and without unnecessarily physically appearing at a clinic. With access to technology,

clinicians can provide person-centered care for a patient with MND by constant monitoring.

According to Hobson et al. (2019, p.154), telehealth can facilitate access to specialists and the

potential for iterative developments to the invention process and process evaluation. Telehealth

was first described as a complex intervention because there are many interacting components,

including the technology, services provided, and how the patient uses it (Hobson et al., 2018,

p.353; Aoun et al., 2021). For telehealth to be effective, the interacting processes must be
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mediated to ensure that the patient benefits from assistive technologies in treating MND (Hobson

et al., 2016, p.317). As such, the efficiency of telehealth in treating MND has its pitfalls, but

technology is quickly progressing, and there is a chance that the associated inadequacies of

telehealth will be resolved.

Specialists and general practitioners offering care to people with MND continue to realize

the importance of telehealth in their practice. Since care for the patient requires a flexible

approach to accommodate unique of clinical preferences and needs, telehealth is proving to be an

effective tool that will allow the patient to receive person-centered care through frequent

monitoring (Ando et al., 2021, p.496; Jumreornvong et al., 2020; Dinesen et al., 2016). More

people with MND are willing to use e-health applications because most people with the

condition face many barriers to attending specialized care, such as logistical challenges to travel,

caregiver availability, and fatigue (James et al., 2019, p.739; Newton et al., 2020). Such benefits

make telehealth a necessity when caring for people with MND, especially those who would

otherwise travel long distances to access multidisciplinary clinics. Telehealth also helps people

with MND to live without a caregiver because they have access to specialized nurses anytime in

an emergency. With the technology, people with MND are not a burden to the community and

can live with little to no help.

While telehealth is crucial in treating MND, it is crucial to ensure that e-health

applications are easy to use and avoid complicating how patients receive care. Dontje et al.

(2022, p.7) and Knox et al. (2022) agree that although patient technology acceptance is high,

some people with MND are unsatisfied with telehealth applications. A possible explanation for

the dissatisfaction is the design issue and ease of use, a secondary concern in telehealth. Hobson

et al. (2018) and Geronimo et al. (2017, p.558) propose extensive testing to ensure that people
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living with MND benefit from user-centered telehealth designs. Like many systems, telehealth

also has its drawbacks, which can affect patient outcomes. For instance, people with MND living

in areas with frequent power outages or weak internet connection are left out and will still rely

on physical visits to multidisciplinary clinics. Telehealth is crucial in managing MND, but it is

not entirely reliable for everyone with the condition.

When offering telehealth services to people with MND, caregivers and specialized nurses

must consider how people view technology. James et al. (2018, p.738) and Taylor et al. (2015,

p.327) noted that people are more likely to use the internet to communicate but are less likely to

use their phones, emails, or videoconferencing application with health professionals. The

findings suggest that even people living with MND are less likely to use the internet to

communicate with their doctors or nurses. Patients with the conditions may not use telehealth

applications due to personal preferences since people with MND prefer face-to-face contact with

the MND clinic team, especially in the early stages of the disease (James et al., 2018, p.739). As

a result of personal preferences, a person with the condition may fail to use telehealth and miss

out on the increased scope of care provided (Hancock et al., 2019, p.8). Considering the

complexity of intervention, each patient with MND requires patient-centered healthcare services,

which cannot be guaranteed with telehealth. However, technology is still an important aspect of

the intervention plan and management of the disease.

Conclusion

The current literature provides people with MND with many treatment options and

intervention plans that may vary from person to person. Every MND patient has different needs,

and it is the responsibility of the patient to collaborate with healthcare professionals during the
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early stages of the diagnosis to plan the best treatment regimen. After the diagnosis, the patient

may be required to regularly ask for health from the multidisciplinary team in charge of their

treatment. Telehealth will allow the patient to access medical help whenever needed by using

communication technologies to ask for physician help. The most common symptoms that the

MND should watch out for include the inability to communicate, cognitive problems, reduced

motor skills, swallowing problems, cough ineffectiveness, and respiratory problems. Each

symptom can be managed using different treatment regimens that suit the patient's needs and

preferences.
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