01. Choices to Make at the End of Life
Navigating the emotional journey of mesothelioma’s final chapter requires both courage and foresight. End-stage patients are faced with important decisions for themselves and their families. These choices include healthcare preferences, financial arrangements and beneficiary designations. Patients may also want to convey last wishes or set up ongoing care for beloved pets.
Thoughtfully planning end-of-life care in advance can help:
Bring patients peace of mind
Ease the emotional burden on families
Establish the patients’ final requests
Proactively documenting a patient’s wishes helps ensure their wishes are carried out properly. It allows healthcare providers and family members to easily advocate for the patient. Advance planning also enables patients to confidently refuse unwanted treatments. In these challenging moments, preparation, clarity and understanding can provide immeasurable comfort.
Did You Know?
02. End-of-Life Care Options and Considerations
End-of-Life Care for Mesothelioma Patients
Mesothelioma end-of-life care choices include supportive care, palliative care and hospice. Each type of care can support a different set of patient goals, including:
Continuing to fight cancer
Spending time at home
Patients may also seek spiritual support during this time. Making decisions in advance can help make sure patients’ care plans line up with their goals.
End-stage mesothelioma patients may want to start by learning about their options. Exploring ways to set goals and talk about these choices can also be beneficial. A little bit of knowledge and planning can help ease this difficult time for patients and loved ones.
Decisions About End-of-Life Care Options and Goals
End-of-life care is deeply personal and varies based on individual needs and desires. One patient might prioritize continuing in-hospital treatment for as long as possible. Another may value the peace and comfort of home care.
Each care option has unique benefits:
Hospital care provides quick access to comprehensive medical treatment. This may ease concerns about the availability of care.
In-home care offers a familiar environment and the company of loved ones. It may boost emotional well-being for patients and families.
Making these choices in advance can help patients and caregivers. Having a clear plan can help soothe stress and mental burdens. And every bit of help matters during this important time.
How Can I Protect Quality of Life at the End of Life for a Loved One With Mesothelioma?
Hospice and palliative care are beneficial, as both focus on the patient’s comfort. Communicating with the patient is crucial during this time. It may be helpful to regularly ask them about appetite, pain and distress. Early, aggressive pain management can really boost comfort and quality of life.
Types of End-of-Life Care
Each patient has unique goals and needs that may align with different types of care. Options for end-stage mesothelioma patients include:
Supportive care can happen during any phase of cancer treatment. It addresses symptoms, treatment side effects and emotional well-being. Patients might choose supportive care to manage side effects while receiving active treatment.
Palliative care aims to relieve suffering for patients and caregivers. It focuses on relieving pain and symptoms for patients at any phase of treatment. It also supports loved ones’ spiritual and emotional health. End-stage patients may choose palliative care for its emphasis on quality of life.
Hospice care is designed for patients who have 6 months or less to live. It offers medical care and emotional support for patients and loved ones. Patients may choose hospice for its ability to boost quality of life in their own homes.
Each patient’s mesothelioma experience is unique. This means individuals will have distinct preferences and goals. Patients and caregivers might feel overwhelmed by these choices.
But healthcare providers and other professionals can assist with these decisions. Support options include doctors, social workers and religious advisors. These specialists can offer guidance tailored to a patient’s wishes and condition.
Which Options Do Mesothelioma Patients Have for In-Home Pain Management?
Pain management is a key part of hospice, so patients have a lot of options. These include over-the-counter drugs and prescription opioids like morphine and oxycodone. Pain medication may come as pills, patches or injections and can be given in-home or at a care center. Patients can try different options to find the ones that control pain and boost comfort most effectively.
Communicating About End-of-Life Care
For peace of mind, patients should share end-of-life wishes with loved ones and care teams. Using end-of-life documents can help bring clarity and make these challenging conversations easier.
How Do I Talk to a Loved One About Their End-of-Life Preferences and Decisions?
Asking open-ended questions may help clarify end-of-life wishes. Experts recommend listening closely to the patient’s answers and being mindful of emotions. It is important that everyone keeps an open mind and talks freely. Research shows cancer care goes more smoothly this way.
03. Legal Planning and Documentation
End-of-Life Documents for Mesothelioma Patients & Families
End-of-life documents include wills, medical instructions and trusts. These records clarify a patient’s preferences for care and other concerns. End-of-life documents help ensure the patient’s wishes are carried out. They also alleviate mental and emotional stress for loved ones.
Several types of end-of-life documents exist. Each serves distinct purposes in expressing and enforcing the patient’s wishes and decisions.
Advance directives are legal documents that express a patient’s future care choices. These records come into play only if the patient can no longer voice their own wishes.
Advance directives come in many forms and may be directed at different people. For example, the documents below may be used to direct personnel at hospitals and other medical settings, like hospice.
A living will documents the type of care a person would like to receive if they become terminally ill or permanently unconscious.
Patients can grant a person medical POA to make healthcare decisions in the event they are unable to do so themselves.
A DNI order prevents healthcare providers from using a machine to breathe for a patient in the event of extreme respiratory distress.
A DNR order instructs healthcare providers not to perform cardiopulmonary resuscitation (CPR) if the patient becomes unresponsive.
The above may only be implemented after a doctor assesses a person’s condition.
Patients may also wish to fill out forms to direct emergency personnel outside the hospital setting. Absent such forms, emergency medical technicians (EMTs) must do what they can to stabilize a person for transfer to a hospital. This includes performing CPR and intubation, even if a person has a DNI or DNR.
States have their own emergency personnel instruction forms. They are sometimes generally referred to as portable medical orders, or Physician Orders for Life Sustaining Treatment (POLST). But states may have different terms for the form. For example, the state of New York calls its form Medical Orders for Life-Sustaining Treatment (MOLST). An attorney can help fill out POLST forms with a patient’s preferences.
Patients should share advance directives with loved ones, healthcare providers and legal representatives. This helps ensure the patient receives only the care they want. And, if the patient changes their mind at any time, many advance directives can be changed or revoked.
End-of-Life Legal & Financial Planning Documents
End-of-life legal and financial documents relate to a person’s money and other assets. These records determine what will happen to a patient’s belongings after they die. Many of these documents are considered advance directives. Some express care choices in addition to plans for property or money.
A living trust is a document that places a trustee in charge of managing an individual’s assets. Mesothelioma patients can set up trusts to manage their assets for the use and benefit of them and their families. An experienced attorney can create a living trust that suits a patient’s unique needs.
Mesothelioma patients might consider a living trust for several reasons:
- To assign a trustee who will manage assets if the patient loses mental capacity
- To potentially sidestep the time-consuming and costly process of proving the validity of a will
Living trusts can also help ensure assets are managed quickly and efficiently after a person passes.
Last Will and Testament
A last will and testament determines what will happen to a person’s belongings after they die. It is commonly referred to simply as a will.
Assets With Designated Beneficiaries
Not every asset is subject to a last will and testament. Some non-will documents include designated beneficiaries, like life insurance policies. The assets provided by these documents go directly to a beneficiary when a patient passes.
For mesothelioma patients, drafting a will can:
- Designate guardians for minors or pets
- Give assurance that personal wishes, not state courts, dictate property matters
- Reduce potential heir disputes by clearly allocating assets
If a person dies without a will, the state decides how to distribute a person’s belongings. The state’s decisions may not conform with the deceased person’s wishes.
Wills are complicated documents. They are subject to many laws involving their creation and execution. Attorneys can help patients ensure their wills are properly created so they can be properly executed.
04. Funeral Plans
Funeral Planning for Mesothelioma Patients
Funeral decisions include choosing between cremation, cemetery burial and other options. Patients may also want to specify service preferences. This can include religious rites and requesting specific people as pallbearers, singers and other roles. Patients may also want to ask a particular person to deliver their eulogy.
Planning a funeral can be time-consuming and costly. Planning ahead can help ensure the patient’s wishes are respected. It can also help reduce unexpected costs.
Decisions About Funeral Planning Responsibilities
Some mesothelioma patients choose to be actively involved in their funeral planning. Others may opt to distance themselves. In either case, patients should discuss their preferences early. This can help ensure they get to be as involved or uninvolved as they want.
When patients decide against involvement, family and friends can work together. This collaboration can help everyone feel good about honoring their loved one’s wishes.