Managing End of Life Care

Your guide to managing practical and emotional issues during this difficult time

Coping with your feelings

If your loved one’s cancer reaches a terminal stage (i.e. when it stops responding to all treatments), your doctor may want to talk to you and your family about stopping treatment and beginning end of life care. The decision to stop treatment is an immensely difficult one, and you are likely to feel many different types of emotions at this time

shock and sadness

Even if your loved one has been battling cancer for a very long time, talking about end of life care can come as a big shock to you and your family. You are likely to feel extremely distressed, tearful and upset.

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Overwhelming confusion

Initially, you may not know what to do and be unable to think clearly. You might find it hard to accept your situation, even if you know that your loved one is getting worse.

Guilt

You may feel that you could have done more to help your loved one.

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Anger

You may feel a powerful sense of anger – at yourself, your clinical team and those around you, or at the situation you find yourself in. If can be extremely hard to see normal life going on around you when your own world has changed so much.

It is important to remember that the feelings you are experiencing are completely normal. It can help to talk openly with your family and your clinical team about how you are feeling, and lean on them for support with decision making.

Understanding the prognosis and your care goals

When making difficult decisions on behalf of your loved one, it is essential to clearly understand the prognosis with the help of your clinical team. These are some aspects you may want to understand better

How long your loved one has to live

Your clinical team may give you a potential life expectancy time frame depending on various aspects of the disease – the type of cancer, its location, response to treatment, and several other associated factors. However, as with complex medical conditions, predicting life expectancy for patients with terminal cancer can be tough.

Quality of life

While treatment options may still be available, it is important to understand the effects they may have on the quality of life of your loved one. Having an open discussion with your clinical team can help you understand the benefits and risks of various treatment options.

It is normal to want to be prepared for the future.
Here are some questions you may want to ask your doctor while making the decision that is right for your loved one:

What is the best we can hope for by trying another course of treatment?

Will the treatment ease side effects or slow the spread of the cancer?

Are the possible rewards bigger than the possible drawbacks, i.e. is the treatment worse than the illness itself?

What are the potential side effects of the treatment? How likely are they to occur?

Having an open and honest discussion with your doctor can help you decide whether to explore more treatment options or withdraw treatment and start end of life care.

Talking to your loved one about the situation

It can be very hard to inform your loved one about their terminal illness and talk to them about the road ahead. You may not know what to say, or worry that you will say the wrong thing. Remember that the most important thing at this time is not what you say, but that you are showing how deeply you care for them. 

Your loved one deserves to know the realities of their situation. Some families may talk openly about these issues, while others don’t. There is no right or wrong way to communicate. Having said that, it can be helpful to have an open discussion with your loved one about the situation. He or she may have certain goals for their treatment, or a clear preference on how they would like to be cared for towards the end of their life. 

If you are unsure about the preferences of your loved one, here are some questions you may want to ask them

  • What is most important to you at this time?
  • Is it important that you be as comfortable and pain-free as possible during the last stages of cancer?
  • Is it important to continue with treatments that may help you live longer, but may cause pain or discomfort?
  • Would you like to play an active role at this time? Would you want to explore options such as an advance directive?
  • Would you prefer to have me or other members of our family make decisions on your behalf?
  • If you choose to seek comfort care, would you like to be cared for at home, at the hospital or in a specialized nursing home?
  • Do you want to seek the support of a therapist or any other professional to help you cope at this time?

If you have trouble talking about these painful topics, do not hesitate to seek professional advice. Sometimes, it can help to talk to a therapist, your family or a third party about these issues. 

As a caregiver, knowing what your loved one wants may mean letting go of some of your own opinions. For example, you may want to keep your loved one alive, no matter what it takes. However, he or she may wish to stop receiving life-sustaining measures at a certain point. In the end, what matters most is the patient’s choice and feelings. If you and your loved one can’t agree, you may want to ask a professional to facilitate a discussion between you both in order to arrive at a decision on the way forward.

Making the decision that is right for your loved one

A terminal cancer diagnosis brings with it a number of painful decisions that need to be made. For some families and communities, it is normal for the patient themselves to be in charge of making decisions pertaining to end of life. In other families and cultures, majority of the decision making is done by the caregiver and family, who may make decisions with or without the patient knowing. Every family’s situation is unique. 

If you are tasked with making critical decisions on behalf of your loved one, it is important to consider the following

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If your loved one is conscious and able to communicate, it is very important to have an open and honest discussion with them about the kind of care he or she would like to receive in the final stages. It can be helpful for you and your clinical team to document your loved one’s wishes in an advance directive.

If your loved one is not in a position to communicate or sign an advance directive, you may feel anxious making decisions on their behalf. Try to think about what he or she would want, or imagine what he or she would say if they could talk. Try to remember if he or she said something in the past than can help you make decisions.

Often, the best way to communicate with others is to just listen. Be open and allow the members of your family to express their thoughts, feelings and fears about the situation. At this time, it can be beneficial to hold a family meeting that is facilitated by your doctor. Your doctor can lead the discussion, clearly explain the situation and the possible next steps, and answer questions. Having an open discussion with everyone present may reduce the conflicts and help you arrive at the right decision for your loved one and family.

Preparing for end of life care

Sometimes the patient, family, and the cancer care team may jointly decide to stop treatment since the cancer is no longer responding to it. However, cancer care continues with a primary aim to improve the quality of life for the patient, caregivers, and everyone involved in the cancer journey. Medical assistance and treatments received towards the end of life may be largely focused on controlling pain and easing various other symptoms associated with the cancer. 

You may have several questions about what to expect during the last stages of your loved one’s life with cancer. While no one can really predict what may happen towards the end of life, understanding what to expect – physically, mentally, and emotionally – will give you a better sense of control. All questions and anxieties should be discussed in detail with the cancer care team and your family, so that they are suitably addressed. 

Research has shown that an honest conversation with everyone involved in caring for your loved one will help you deal with this period better. Stress levels decrease and everyone’s general ability to cope with this stage of cancer care increases. This will help you and your family know what to do during this extremely emotional phase of your cancer care journey.

What can you expect as a caregiver?

As a caregiver, you can play a key role in this phase of your loved one’s cancer care journey. You can encourage them to stay positive and help cope with the physical, emotional, and mental aspects of care during the final phase of the cancer journey. If care is being provided at home, take help from the cancer care team about specific steps to follow and how to provide the maximum possible comfort to the cancer patient.

Sharing the prognosis with your near and dear ones will also help them prepare better for all outcomes. As a caregiver you can help everyone involved accept the fact that your loved one may be nearing the end of life, but encourage them to hope for the best. It is important that you work together and learn to understand and adapt coping mechanisms that will help you deal with your emotional and mental needs.

You can refer to this section for more details on different coping mechanisms which will help focus on the emotional, physical, and holistic well being as you deal with the cancer journey. Read more

What can patients expect?

As a patient, you may experience possible changes in body functions towards the end of life. There may be symptoms like severe pain, profound weakness, complete loss of appetite, trouble swallowing, short attention span, and acute weight loss, to name a few. You may face some of the common end of life symptoms or may not face any at all, however it is better to know what to expect and plan for all eventualities. 

Honest and open communication with the people who are helping to care for you is vital. While it is difficult to talk about the end of life, it is important to stay positive during this trying phase and stay connected with your near and dear ones, and your cancer care team. Talk to your clinical team about the care preferences you may have and where you want to receive that care. Talk to your caregivers, family, and friends about your feelings and emotions and encourage them to share how they may be feeling and coping with this phase of your cancer journey. Try to focus on the comfort that you can give each other. This is the time where you should try to build more happy memories and improve the overall quality of your life.

Planning hospice care

Each patient and family facing the end of life phase of their cancer journey will have a unique experience. Research has shown that both cancer patients and their families may benefit immensely from hospice care, as it significantly improves the quality of life. You may refer to this section for more information about hospice care and see if it is the right fit for you. Read more
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