Resources
Here are several wonderful resources that you can browse for a range of helpful information.
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Resources
A living will (or advance directive), although it is not a legally enforceable document, it alerts medical professionals and your family to the treatments you want to receive or refuse. Talking to your family and loved ones about your wishes can guide them to make the right decisions about sustaining your quality of life that you would agree with.Read more in this Advance Directive & Living Will PLANNING GUIDE.
Resources
As Death Approaches
Practical advice and comfort measures for caregivers present during the final days of life.
As death approaches, people often experience a decrease in appetite with little or no interest in food and drink. They may be unable to digest food or to take fluids by mouth.
While a decrease in appetite and thirst is not painful and is an expected part of dying, it can sometimes be worrisome. People are often concerned about reduced calorie intake or the effects of dehydration.
It is natural for families to want to continue providing nourishment at this time. In specific situations artificial hydration (such as intravenous fluids) can be beneficial. Generally, however, hydration does not improve comfort or prolong life. In order to make the best decisions about hydration it is important that the patient, family and health care team work together.
Your physician, Home and Community Care Nurse or hospice palliative care team can offer information and advice about the role of food and fluids and ways to handle decreasing intake.
Discussions about nutrition are important. As death approaches, peoples’ needs and wishes can change, making it necessary to keep asking, “what is helpful for this person at this time?” There will be no single ‘right answer’ to this question, as it will always depend on the unique circumstances of each patient.
Helpful Things To Consider
- Decreasing food and fluid intake is a common, natural part of the dying process.
- Most dying people do not experience thirst or hunger as death approaches.
- Giving food and fluids by artificial means (e.g., intravenously) does not usually prolong life or improve its quality.
- Providing food and fluids by artificial means may, in fact, increase distressing symptoms such as shortness of breath, respiratory congestion, restlessness, nausea and vomiting.
- When people have difficulty swallowing, eating and drinking may put them at risk for choking.
- Artificial hydration does not provide nutrition.
- Artificial hydration does not usually prevent or improve thirst or relieve a dry mouth.
- Frequent mouth care can help relieve a dry mouth. (See General tips for mouth care.)
Providing Care and Comfort
General tips for mouth care:
- Keep lips moist with petroleum jelly, water-soluble gels, artificial saliva or unscented moisturizer.
- Use a moist cloth, soft toothbrush or plain mouth swab to wipe the mouth; avoid glycerine and lemon swabs, which can dry the mouth further.
- Mist the mouth with water, being careful not to give too much.
When the person is still able to swallow safely:
- Give mouth care, as above.
- Let him or her decide on the amount of food and fluid wanted.
- Offer ice chips or popsicles.
When the person is no longer able to swallow:
- Continue mouth care, as above.
- Consider offering other kinds of support such as gentle massage, skin care, music and conversation.
After Death
This final leave-taking can be a difficult time. You may wish to spend time with the body of the person who has died, reminiscing and saying good-bye.
Before the funeral home attendants arrive, you may want to bathe and/or dress the person or send special objects or notes with him or her. You may prefer to choose the clothes you want the person to wear and give them to the attendants, or you can bring them to your meeting at the funeral home.
When the funeral home attendants arrive, they will move the body to a stretcher in preparation for leaving. The body will be placed in a special zippered bag made for the purpose of transport.
Consider whether or not you wish to be present when the person’s body is removed. You may wish to remain with the body or you may want to leave, go into another room or go for a walk while the stretcher is taken out.
Memorial or funeral plans can be made or confirmed at an appointment with the funeral home the next day.
Ask your health care team about local bereavement resources available from the hospice society or other services in your community. Even normal grieving can have a profound impact on you and support can be beneficial for your on-going health.
Resources
End of Life Planning and Preparation
Despite a doctor’s best efforts and hard work, treatment sometimes stops working, and a cure or long-term remission is no longer possible.
Grieving Your Losses
Learning that you are terminally ill frequently brings about intense feelings of anger, fear, grief, regret, and other strong emotions. It is normal to grieve and mourn the loss of your abilities, the loved ones you will leave behind, and the days you will not have. Talking about your feelings and concerns with family, friends, and caregivers help bring you comfort.
Arranging Your Affairs
Although discussing death and dying is difficult and sad, it is recommended that a terminally ill person revise and review his or her wishes at the end of life with family and health care professionals. You also may revise your goals and plans as your circumstances or preferences change. Starting the conversation early strengthens your relationship with the health care team. For many people, worrying about what will happen to their surviving family members is difficult. Planning ahead to settle legal, financial, and business affairs also allows you and your family to concentrate on the emotional aspects of your illness and its effect on your family.
Settling your affairs may include locating and organizing important legal and financial documents, such as your will, marriage and birth certificates, social security card, insurance policies, bank statements, and investment summaries. If you have complicated finances or are concerned about leaving your family with high medical bills or debts, consider talking with a financial advisor or social worker. Financial professionals cannot eliminate bills or debts, but they will help you sort out your finances and lessen the stress of financial worries for you and your family. Some people also find it helpful to plan some aspects of their own funeral or memorial service. This is done with a set of written instructions or by talking with your family or close friends about your wishes.
An important step for many is to create, or perhaps make changes to, an advance directive. An advance directive is a legally binding set of instructions that explains the kind of medical treatment you want and do not want if you become unable to make those decisions for yourself. An advance directive provides a way for you to communicate your wishes to your family, friends, and health care professionals ahead of time to avoid confusion later on. People who have advance directives know that their wishes will be respected. Although an advance directive may be oral (spoken) in most states, an advance directive is less likely to be challenged if it is in writing. It is a good idea to discuss your advanced directive with your family to clarify your decisions and the values underlying them.
Completing Unfinished Business
As you approach the end of your life, there may be certain things you wish to accomplish in the time you have left. These tasks help bring a sense of meaning and completion to your life and may range from fulfilling a lifelong dream to more simple experiences, such as re-reading a favourite book or spending time with those who are important to you. Finding peace in important relationships and saying the things that matter most are also significant aspects of life completion. There may be conflicts you wish to resolve or apologies you want to make. You may want to say goodbye to special people and tell family members how much you love them. If you are able, you may want to accomplish these tasks in person, or you may want to pass on a message in writing, by telephone, or through a family member. It may be possible for you to travel to visit special people or for them to travel to you. Keep in mind that, despite your best efforts, people may not respond the way you want them to. Some people may not feel comfortable visiting you or may be afraid they will say the wrong thing. You may be comforted by knowing that you have done your best to heal a troubled relationship.
Reviewing Your Life
It is only natural to want to leave a legacy (evidence that your life mattered and that you made a difference in the world). Take time to reflect on and celebrate the events in your life; the things you have accomplished; the people you have loved, and the individuals and events that have shaped you. Talk with your family and friends about the times you have spent together and the memories and events you have shared. You will not only be honouring memories of the life you shared together but also creating new memories for them to cherish.
As you review your life, you may want to write down your memories, record them on tape or video, or ask someone to write for you as you talk. Talking about or recording your wishes and dreams for loved ones helps ease regrets about having to leave them and helps them feel connected to you at important times throughout their lives. For young children, it may be enormously helpful to leave videos and albums that remind them of your love and connection. Creating opportunities to celebrate your life will also offer an opportunity to record happy moments that your family and friends will cherish after you are gone.
Religion And Spirituality
Many terminally ill patients report that religion and spirituality are an important part of their lives. For some, organized religion is a central part of life, and the support of faith and clergy members is an important source of comfort at the end of life. For others, spiritual comfort may lie in a sense of connection to nature or people. What matters is finding such comfort, completion, and peace, which will sustain hope and meaning. Studies show that patients who feel spiritually supported have a better quality of life. Patients and their families should feel comfortable asking for spiritual support and for help in finding these resources from members of the cancer care team.
Resources
Talking to a Dying Loved One
The thought of dying often times evokes fear and apprehension in people. Thinking of others dying can make our own mortality seem very real. Research has shown that dying people are even ostracized from society, even avoided by close friends and family.
It is quite common for friends and family to say “I want to remember (my loved one) the way they were… I do not want to remember them frail and dying…” But, what about the dying person? They often become isolated and lonely in death…. This is certainly not the type of death most of us would choose. Being surrounded by friends and loved ones is how the majority of us would choose to spend our last months or days.
The expected death of a friend or loved one changes your relationship – sometimes for the better, bringing you closer together, but sometimes for the worse. It can be incredibly difficult and awkward for many people to talk to their dying loved one. You might find yourself wondering “What do I say?” and “How will I know when I’ve said enough?”
Often the dying loved person wants to share final thoughts, wishes and gratitude.
There are some common beliefs about talking to the dying that have the potential to prevent us from talking at all and depriving us of final conversations….
Belief #1: “If I Talk About His/Her Illness, I Will Only Upset Him/Her More.”
It’s a common belief that talking about someone’s illness or impending death will only upset them. Many people are surprised to find that a dying person wants to talk about what’s happening to them. In fact, many dying people are thinking the same thing – that talking about what’s happening to them will only upset their friend or loved one. They know their death is close and may need to say goodbye…
Belief #2: “Talking About Her Illness Or Impending Death Will Make It Worse, Or Even Cause Her To Die Sooner.”
Some people believe that talking about death will actually make it happen sooner. They may think that discussing death will stress the dying person and could bring about a heart attack. They may also fear that if the dying person accepts their own death that they will give up and die sooner.
This belief is entirely unfounded. While talking about death can be stressful for the dying person and their loved ones, it can also be therapeutic and healing for the dying person as well as their family and friends.
Of course, not everyone will want to talk about dying. If your or your dying loved one truly don’t want to discuss their death, that’s okay too. There are other things you can talk about.
Belief #3: “If I Talk To Him/Her About Trivial Things At Such A Serious Time, I’ll Only Offend Him/Her.”
This belief prevents many people from discussing the day to day aspects of our lives. We may think that talking about the rugby game or our favourite television show will make it seem like we don’t care about what’s happening to our loved one. We might think that he can’t possibly be interested in the news or even in what happened to us at work today.
The truth is, most dying people are still interested in the same things they were interested in before they knew they were dying. If he’s an avid sports fan, that’s not necessarily going to go away. If he cares about you, chances are he’ll want to hear about what’s happening in your life, just as he did before. Talking about daily life affirms the fact that, while his life is limited, he’s still living.
Looking at the first three beliefs, we see that many people feel like they can’t talk about illness, can’t talk about dying, and can’t talk about life. What’s left to talk about?? This brings me to belief #4.
Belief #4: “If I Don’t Know What To Say, I’m Afraid The Silence Will Be Awful.”
Chances are, if you believe numbers 1-3, you don’t know what to say and silence will ensue. Moving beyond those beliefs and finding a way to relate to your friend or loved one can help prevent awkward silences.
It’s also important to know that not all silence needs to be awkward. A calm physical presence is often all a dying person needs or wants. Just holding their hand – being there for them may be enough.
“Love is stronger than death even though it can’t stop death from happening, but no matter how hard death tries it can’t separate people from love. It can’t take away our memories either. In the end, life is stronger than death.”
Resources
Recognizing the Dying Process
The dying process usually begins well before death actually occurs.
Death is a personal journey that each individual approaches in their own unique way. Nothing is concrete, nothing is set in stone. There are many paths one can take on this journey but all lead to the same destination.
As one comes close to death, a process begins; a journey from the known life of this world to the unknown of what lies ahead. As that process begins, a person starts on a mental path of discovery, comprehending that death will indeed occur and believing in their own mortality. The journey ultimately leads to the physical departure from the body.
There are milestones along this journey. Because everyone experiences death in their own unique way, not everyone will stop at each milestone. Some may hit only a few while another may stop at each one, taking their time along the way. Some may take months to reach their destination, others will take only days. We will discuss what has been found through research to be the journey most take, always keeping in mind that the journey is subject to the individual traveler.
The Journey Begins: One To Three Months Prior To Death
As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact withand care for. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets. They may also undertake the five tasks of dying. The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.
One To Two Weeks Prior To Death
Mental Changes
This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.
The dying person may also experience hallucinations, sometimes seeing or speaking to people that aren’t there. Often times these are people that have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.
Physical Changes
The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:
- The body temperature lowers by a degree or more.
- The blood pressure lowers.
- The pulse becomes irregular and may slow down or speed up.
- There is increased perspiration.
- Skin color changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish.
- Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
- Speaking decreases and eventually stops altogether.
Journey’s End: A Couple Of Days To Hours Prior To Death
The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed and talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.
The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. Stokes” breathing, rapid breathes followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.
Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dying during this time.
Eventually, breathing will cease altogether and the heart stops. Death has occurred.