It’s an emotionally challenging time for your family. When a loved one reaches the final stages of their chronic condition, it is important to seek help to make final decisions, deal with grief, and provide comfort.
Despite best treatment, attention, and care, the time will eventually come. At this point, your focus as a caregiver should be on making them feel comfortable while utilizing the remaining time to its fullest. It may be anything from a few weeks to months or years, depending on your loved one’s circumstances and the nature of the illness.
During this time, it’s crucial to take palliative care measures designed to manage the symptoms such as shortness of breath, nausea, constipation, and control pain. End-of-life care also involves offering spiritual and emotional support, also known as hospice care.
Why is End-of-Life Care Important?
At any stage, caregiving is uniquely challenging. However, when a loved one approaches the end of life, it’s particularly stressful to make complex decisions and deal with grief and loss. Caregivers experience a whirlwind of emotions, including denial, anger, anxiety, guilt, sorrow, and perhaps a tinge of relief that their loved one is not in pain anymore.
In such a situation, you should recognize that end-of-life care interventions necessitate plenty of support. It can be emotional support, legal arrangements, financial support, etc. Late-stage care also requires you to express your love, forgive any grudges, and resolve any differences.
Even though it’s tough, end-of-life care or late-stage care can help you transition from the caregiving phase to the accepting and healing stage. These precious moments allow you to say goodbye while enabling you to come to terms with them.
When Do You Need Late-Stage Care?
One cannot pinpoint a specific time when end-of-life care should begin. It depends on the progression of the disease as well as the individual. For instance, a doctor keeps you update with information on stages in diseases like Dementia and Alzheimer’s.
Therefore, you can plan appropriate care for your loved one. There are various other signs through which you can tell that it’s time to opt for palliative and hospice care instead of curative care options.
Some of those signs are:
- Poor quality of life despite curative treatment
- Illness continues to progress.
- Frequent visits to the emergency room
- Worsening symptoms within the last year
- Your loved one wishes to spend their time at home instead of any more hospital visits.
- They do not want to continue their treatment.
Even if you notice the above-mentioned signs, it’s best to consult your primary healthcare provider before starting end-of-life care.
Needs of Caregivers and Patients in End-of-Life Care
As the patients enter late-stage care, their needs will change, thereby impacting the caregiver as well.
These are some of the areas where you or your loved one may need greater help:
• Respite Care: Caring for a terminally ill person can be physically and emotionally overwhelming. Respite care aims at giving some relief to caregivers wherein they can delegate the maintenance to a hospice facility. They can be in charge of supporting your loved one for a few hours. You can utilize that time to grab coffee with friends or have some me-time to de-stress yourself.
• Grief Support: People deal with grief in different ways. Some feel numb, while others feel extreme sadness. In either case, you should think about consulting bereavement specialists during end-of-life care to prepare for the loss.
• Comfort and Dignity: Despite their diminished cognitive functions, patients can feel lonely, loved, sad, or at peace. Irrespective of whether they receive end-of-life care at home, hospice facility, or hospital, you should take interventions that ease their discomfort and pain. They should still be able to see their family.
• Practical Assistance: Due to diminished cognitive ability, some patients approaching their later stages may not make much sense of their surroundings. Others may not be able to eat, walk, sit, or talk anymore. For this reason, they require practical care and assistance in dressing, feeding, bathing, and other activities. That demands a lot of effort from a caregiver, which is why you should seek help from physician-ordered nursing services, a hospice team, or personal care assistants.
What Constitutes End-of-Life Care Plan?
If your loved one is fighting a life-limiting illness, it’s important to discuss the treatment preferences with the patient during the final stages. Patients, too, should feel comfortable to discuss their wishes with family before a medical emergency strike.
You should keep the following points in mind while formulating the end-of-life care plan with your care provider:
• Seek Legal Advice: This is something to be taken care of while the patient can participate. You should seek legal advice on an advance directive, power of attorney and living will while taking the patient’s wishes into account. This step is necessary to avoid any family dispute later on.
• Resolve Conflicts: Watching a loved one deteriorate is not easy. It often leads to conflict among family members. They may not find common ground when it comes to medical treatment, living arrangements, and other decisions. You should consult a hospice specialist, social worker, or a trained doctor in such a scenario.
• Involve and Educate Children: Chronic illness is difficult to come to terms with, even for adults. It’s not any easier for children; they may have difficulty even grasping the subject. But however difficult it may be, it’s essential to keep the conversation honest. The age-appropriate information can be conveyed by storytelling, using puppets, or drawing pictures.
• Facilitate Open Communication: While developing a late-stage care plan, there should be a primary decision-maker in charge of streamlining communication among family members and care providers. Such big decisions require everyone’s involvement and clear communication.
• Understand Patient’s Values: In many cases, patients may no longer be competent to feel their wishes or know their opinions or values. If they have not prepared the advance directive or living will, family members would have to consider the patient’s values. What would they want? How would they feel? How could this affect them? What would they do in this situation? Think about their vantage point while considering placement, treatment, and decisions.
How to Provide Comfort?
Depending on the type of chronic illness, patients may experience different end-of-life symptoms and thus need comfort as much as possible. Some common signs and comfort measures are outlined below. However, these may not always be indicative of death or deteriorating condition.
• Irregular/Shallow/Labored Breathing: Some patients find it easier to breathe while lying on their left side. Besides, you can place pillows behind their back and beneath their head. Placing a mist humidifier in their room is also a great option.
• Skin Becoming too Cold: You can place blankets to make them feel warm. However, avoid the use of heating pads and electric blankets that can cause burns.
• Loss of Appetite: Patients approaching the later stages of their life-limiting condition may feel a decreased need for fluids and food. It’s best to let them decide when and what to eat or drink. Keep their lips moisturized with a lip balm, and their mouths mist with the help of glycerin swabs.
• Becoming Unresponsive: Many chronic disease patients lose the ability to talk at later stages. However, most of them can still hear, so try to speak to them as much as possible.
• Confusion about Identity, Place, and Time: It can be scary not knowing yourself and the people around you. Help reorient the patient by gently reminding them of their family, themselves, date, and time. Speak in a calm voice while doing so.
• Bowel and Bladder Control Problems: Keep the patient comfortable, dry, and clean. Use disposable pads to clean them and remove them when soiled.
Offer Emotional Comfort
Different individuals have varying emotional needs, and that stands true even during the later stages of life. That said, there are some common emotions felt by patients that include feelings of loss of dignity and control. Chronic illnesses cause a decline in physical abilities, which is why most patients feel this way.
They also fear abandonment or being a burden on their family. Therefore, it falls upon their family and caregivers to offer emotional support during end-of-life care.
There are several different ways you can follow:
• Offer Company: Try to find time and keep them company. Watch movies together, read to them, talk to them, or hold their hand.
• Do not Burden Them: As hard as it may be, refrain from talking about your grief, loss, sadness, and fear. You may need external or family support to speak about your feelings.
• Let Them Express: Talking about death with a loved one is scary and challenging. However, allow them to share their fears, wishes, concerns, and opinions to make them feel comfortable. Focus on listening without arguing or interrupting.
• Avoid Withholding Information: If it concerns them, share the information, and involve them in decisions. Given that they can still comprehend, it honors their wishes and opinions.
On that note, we end our discussion. By studying the information discussed here, you can carefully approach end-of-life care and make your loved one feel at peace.