When you have a loved one living with a life-limiting condition, you may have heard about palliative care as soon as they were diagnosed or in the last couple of months. Since the well-being of your loved ones is a top priority during this time, you need all the help you can get.
Palliative care is a specialized medical condition that aims at helping your loved one as they battle with life-limiting conditions. It ensures you and your loved one understand their medical condition, what to expect as the condition progresses, and how to overcome challenges, among others.
Your loved one can have both curative and palliative care simultaneously. Additionally, your loved one can continue with palliative care even after recovering from their medical condition.
What is Palliative Care?
This is a type of medical care that you and your loved one can benefit from when their healthcare provider diagnoses them with a serious or terminal illness.
A specialized team will come together to ensure your loved one leads a quality lifestyle despite their life-limiting health condition. Palliative care aims at relieving your loved one’s suffering from symptoms of the illness or the side effects of their treatments.
Sometimes your loved one’s health condition may decline rapidly, giving you little time to plan. Additionally, you and your loved one may be traumatized by their medical condition, making it hard to make critical medical decisions. This is where palliative care comes in, and the palliative care team will psychologically prepare you on what to expect as your loved one condition progresses.
Palliative care will help you prepare for any eventuality, be in a better position to make critical decisions, and, at the same time, have ample time to spend with your loved one.
Explaining the goals of palliative care
Facing a serious medical condition is a traumatizing experience for your loved one. As a spouse, brother, sister, or parent, you want the best for them, but you cannot provide the care they need when you are also reeling from the shock of their diagnosis.
However, a palliative care team will help you come to terms with your loved one’s medical condition.
The primary goals of palliative care include the following:
- Help in pain management
- Help provide relief from the side effects brought by some treatment procedures and distressing symptoms.
- To regard dying as part of our normal lives
- Offers support to your loved one, ensuring they lead an active and fulfilling life
- It incorporates psychological, psychosocial, and spiritual care into your loved one’s care routine
- It doesn’t hasten or intend to postpone death
- It helps you and your family cope with the effects of your loved one’s illness
- Prepares you on what to expect as your loved one illness progresses
- Enhances your loved one’s quality of life
- It positively influences the course of a patient’s illness
- It offers you and your family bereavement counseling, ensuring you are ready for any eventuality
- It may prolong your loved one’s life, especially when applied from an early stage. This is made possible by combining various therapies, such as radiation and chemotherapy.
Highlighting the benefits for patients and their families
Palliative care plays a crucial role in the lives of a seriously ill patient and their loved ones. Sometimes, you may underestimate its benefits in your loved one’s life. Still, if you take a step back, you may realize how it incorporates physical, psychological, psychosocial, and spiritual aspects that will make your loved one’s journey battling their illness more comfortable.
Some of the benefits that you and your loved one will reap when they receive palliative care include:
- The palliative care team will put your loved one’s well-being first.
- Your loved one will have full support from all the palliative care team members.
- Palliative care will help in the management of pain, offering relief from symptoms and side effects of some treatment procedures.
- It will help you and your loved one plan on what to expect.
- It provides insight into the illness’s progression, allowing you to make an informed decision.
- Improves your loved one’s quality of life
- It helps reduce the likelihood of your loved one receiving aggressive and even unwanted treatment procedures.
- It helps you and other family members come to terms with your loved one’s conditions, which will help in relieving and reducing stress.
- Provide extra support to you and your family when you need it most.
Goals of Care in Palliative Care
The primary focus of palliative care is to provide comfort and improve your loved one’s quality of life after a diagnosis of a life-limiting medical condition.
A palliative care team will come together to address your loved one’s physical, mental, emotional, and spiritual needs. What palliative care aims to achieve is providing a wholesome type of care that addresses all aspects of your and your loved one’s lives.
With the support of a palliative care team, you will be in a better position to understand your loved one’s illness and offer the necessary support.
A palliative care team includes the following members:
- Doctors,
- Nurses,
- Psychologists,
- Chaplains,
- Social workers,
- Volunteer
- caregivers
One thing to note is that your loved one can access palliative care at any stage of their chronic or life-limiting illness, and they can receive it together with their curative treatment. Additionally, they continue receiving palliative care even after they get well.
A palliative care team will mainly focus on the following aspects of the care of your loved one:
- Pain relief
- Symptom management
- Providing helpful resources
- Improving your loved one’s quality of life
- Providing advance care
How Will A Palliative Care Team Help My Loved One?
Each member of a palliative care team plays a significant role; for instance, a nurse or a caregiver will listen to a doctor’s recommendation or read a patient’s medical statements to know if there is an indication of an oncoming patient mortality. Some of the most common oncoming mortality signs include the following:
- Depression
- Shortness of breath
- Anxiety
- Mental confusion
- Exhaustion
- Low appetite.
When a palliative care team notices some of the oncoming mortality signs in your loved one, they mainly focus on ensuring the patient is comfortable and free from pain.
The role of a palliative care team is to consider the effect of declining health on you and your loved one. You will notice that palliative care providers usually build a rapport with you and your loved one, as this helps them to communicate about your loved one’s health condition.
Communication is key in palliative care, as it will help healthcare and other stakeholders to assess the situation and approach it confidently while considering you and your loved ones’ mental condition.
Communication, especially the dialogue, will help establish an ongoing discussion about what to expect as your loved one’s medical condition declines during its last stages.
Identifying and Setting Goals of Care
Caring for a loved one after a severe illness diagnosis can be an uphill task; you are still struggling to come to terms with their condition, and you need to be strong and care for them.
To effectively care for your loved one, you will need to identify and set goals of care. The easiest way to achieve this is by understanding your loved one’s preferences and what they want to achieve during and after their illness.
These goals could be personal, clinical, or both. Achieving these goals will be critical in your loved one’s treatment and the decision-making process.
Factors to consider when setting goals of care
Setting goals of care for your loved one is crucial as it helps you keep a clear focus on their treatment procedures, motivates your loved one that they can do it, and at the same time helps all the parties to keep moving forward with realistic goals.
The following factors will play a crucial role in achieving your loved ones’ care goals. They are:
- Set specific, relevant, measurable, and achievable goals
- Be time conscious
- Focus your efforts
The following are some of the tips to help you achieve your goals:
Identify Your Loved One’s Care Goals
Doing this will help you prioritize and organize activities that will help improve your loved one’s lives and satisfy them during their illness.
Once you identify your loved one’s care goals, you will be in a position to develop a shared understanding between other family members, the palliative care team, and your ailing loved one.
You will have a better understanding of the personal needs, clinical expectations, and your loved one’s personal preferences. This understanding will help you and other palliative care team members know the necessary steps to take to achieve these goals.
Purpose To Spend Some Quality Time With Your Loved One
Set aside some time to discuss what is important to them during their illness. You can do this by asking them what they want to achieve concerning their care and treatment.
Give your loved one an opportunity to discuss their goals of care with other family members without interruptions.
Help Your Loved One In Decision-Making
Share in the decision-making with your loved one. You can do this by researching relevant information on their illness and sharing this information with them.
Please talk about the risks and benefits of various treatment options that are available for them. Involving your loved one in decision-making helps them to continue feeling as part of the team. It also gives them control of their lives when everything else seems to be falling apart.
Discuss Some Of the Achievable And Challenging Goals Of Care
Identify the goals of care that are both achievable and challenging. Have discussions where you discuss the risks and the challenges and how to overcome some of these challenges. Sometimes, you may have to incorporate several goals of care, especially when your loved one has complex healthcare needs.
You can start by breaking down long-term care goals into smaller but achievable goals that your loved one can accomplish. This will help motivate them to keep going as they will see they are making some progress.
Understanding the importance of goal-setting
Setting goals, whether short-term or long-term, will help you plan your loved one’s care and move forward despite the illness. Goals are important as they will help hold you and your loved one accountable, even if it will be an uphill task.
Setting goals can be easy, but working towards achieving them is where the hard work is. Once you set some goals, they will help you define what you truly want for your loved one.
For example, you can decide to help your loved one exercise daily. This can be balancing or speech exercises. You must be purposeful and work with your loved one to achieve your goals.
Sometimes, it can be challenging, especially if your loved one isn’t up to it. You will need to be flexible to accommodate your loved ones’ wishes. What’s important with setting goals is to ensure you enjoy the journey and not the destination only.
Use the time you have with your loved one to find out what they want most in their lives, and if it’s within your means, let them have it. Additionally, learn to take a step back and let them do what they want in some cases.
Collaboration between patients, families, and healthcare professionals
Collaboration in palliative care means that all the team players assume their different roles, cooperate, work together, share responsibilities, and help each other solve any issues that might crop up.
Collaboration between patients, families, and their healthcare providers helps in smoothing the journeys in palliative care. When a palliative care team works together, it increases the members’ awareness of each other’s skills, talent, and knowledge, leading to improved and quality care.
For an effective collaboration, the care team will need to trust and respect each other.
Resources and Support
Having easy access to palliative care resources and support will make it easy to achieve your goals. Here is a collection of some useful palliative care resources that will help you and your loved one achieve your set goals. They include:
The National Institute on Aging offers advanced care planning to palliative care teams to help them make plans that affect their loved one’s medical condition. This tool offers your loved one an opportunity to plan their future support and care when they still can.
You realize not every person will jump at the opportunity to plan for their future care. But it is necessary, especially if your loved one has a progressive illness that may affect their mental capacity.
This is a website that will empower your loved one to find their voice as they receive their treatment. It will also equip you to help your loved one in their decision-making.
This evidence-based training program aims to promote personal-centered decision-making in palliative care.
American Bar Association
Your loved one can access this tool when they need legal assistance.
The National Hospice and Palliative Care Organization (NHPCO) runs a Caring Connection. This program helps provide free information and resources to people living with a chronic illness and their loved ones to help them make decisions about end-of-life care when they still have a chance or before a crisis.
Conclusion
As a family, it’s important to understand the goals of care in palliative care, as this will help you make necessary decisions and offer your loved one the support they need during this stage in their lives.
You will also understand the serious nature of your loved one’s illness, the role of each member of the palliative care team, and how it will help you work together with other stakeholders to achieve the goals for your loved one’s care.
When caring for your seriously ill loved one, you will need to work together with other family members and caregivers to deliver the emotional, financial, and physical support they need.
This support can be in something small, like ensuring your loved one’s room is comfortable, the lighting is to their liking, and the surroundings are soothing. You can have their favorite music playing but at their desired volume. Emotionally, ensure the presence of other family members and friends is always around your loved one.
At Amy’s Eden, our compassionate caregivers will help you care for your loved ones at any stage of their illness. We will ensure you and your loved one have all the support and resources you need during this time at your fingers.
If you find it difficult to talk with other family members about some difficult medical decisions or end-of-life care, don’t worry, as our caregivers have got your back. We encourage you and your loved one to prepare for any eventuality in your loved one’s illness.
What is important is to spend as much time as possible with your loved one. Focus on the positive and make new memories during this time. For any inquiries on palliative care, don’t hesitate to contact us today, and we will be glad to assist you during this difficult time.
