After a diagnosis of terminal cancer, families face a variety of hard decisions. Patient care must be taken into account as they near the end of their life, as patients and loved ones determine what is going to offer the most comfort. Hospice care and in-home care are often options for mesothelioma patients to spend their last days in the comfort of their own home.
Although they can be tough topics to discuss, wills, DNRs and funeral planning also must be taken into consideration during end-of-life planning. Patients may have certain wishes that they want met, and family members can ensure that their wants and needs are being fulfilled. During this difficult time, families should look into any caregiver resources that might be helpful.
Hospice and In-Home Care for Mesothelioma Patients
A malignant mesothelioma diagnosis is often unexpected and can be scary for patients and their loved ones. Early detection is rare for the aggressive cancer, so many patients are diagnosed with stage 3 or stage 4 mesothelioma. At these late stages, the cancer has spread, treatment options are limited and patients typically face a poor prognosis.
Palliative care is the primary treatment option, offering patients relief from symptoms and the highest quality of life possible. At this point, hospice and in-home care are popular options that also offer help to family caregivers.
Typically when patients have a life expectancy of six months or less, they may consider hospice care. This allows patients to receive healthcare at home, close to their loved ones, though they may also travel to a hospice care facility. Patient comfort becomes the main priority and is the focus of hospice care workers. In addition to providing care to the patient, they offer help and relief to caregivers and help family members address what is ahead.
Hospice care plans will differ for every patient. The hospice care worker will have a deep understanding of the patient’s diagnosis and symptoms, allowing them to offer advice for how to alleviate pain and discomfort. Components of hospice care may include:
- Any necessary medical equipment and supplies
- Caregiving services for hygienic needs, household chores and more
- Dietary counseling
- Medical services for medication management, symptom management, pain management, maintaining vital records and more
- Medication for mesothelioma symptoms and associated pain
- Physical therapy and occupational therapy
- Spiritual and emotional support options, including grief counseling for family
Curative medications, treatments and care options are not available through hospice, so patients and their loved ones should discuss the best option for their particular case.
Late-stage mesothelioma patients often find it difficult to perform day-to-day functions. Oftentimes, they use in-home care to receive palliative treatments at home, closer to their loved ones and in a comfortable environment.
There are many different local and nationwide in-home services patients may consider. Oncologists, nurses and other members of their medical team can often provide recommendations for care providers that they know and trust.
As with hospice, in-home care typically provides 24-hour help, including bathing, feeding and administering medications to the patient. Family members can be as involved with the patient as they want, but with the comfort and help of an experienced professional nearby.
Community Resources for Mesothelioma Patients
There are many community resources that may be available to mesothelioma patients and their loved ones as they near the end of their life. Patients and caregivers should inquire about what options are available to them to get the most help possible.
- Financial Assistance: Programs like the Cancer Fund of America can help provide personal care products, cleaning products, cell phones and more to ease financial burdens and keep patients healthy and safe.
- Meal Assistance: Local or nationwide programs like Meals on Wheels of America or senior centers may deliver meals to older patients. Your local hospital may know more options.
- Personal Assistance: Local organizations like the Salvation Army, Catholic Charities, Lions Clubs, local churches or synagogues may be able to offer help on an individual basis.
- Physical and Emotional Support: Organizations like the American Cancer Society provide an array of support programs and support groups, designed specifically for late-stage patients.
Social workers, members of a medical care team and online resources are great places for patients and caregivers to start looking and asking questions about what help is available to them.
Wills and DNRs for Mesothelioma Patients
As mesothelioma patients near the end of their lives, they must make important decisions, such as if they want to sign a DNR (Do Not Resuscitate order) and what they will outline in their will. This can help the patient come to terms with their situation, while also helping family members fulfill their wishes.
A will, or Last Will and Testament, is a legal document that outlines how a person’s effects and wealth will be distributed to survivors. Writing a will ensures that a patient can determine where and how their belongings and money are distributed. An executor will also be declared in the will, which determines who is legally responsible for carrying out any financial obligations once the patient has passed. This process is called a probate and can last from months to years as the estate is settled.
If a will is not done before the patient’s death, they’re considered “intestate” and intestate succession occurs. An executor is assigned, typically to the closest surviving family member. Assets are distributed, typically only to related family, excluding unmarried partners and friends. The surviving spouse usually gets the most, followed by surviving children. There are many additional details that are taken into consideration, so each case is different based on the circumstances.
Living wills, also referred to as a directive to physicians or advance directive, are different in that they specify patient wishes during their life, versus after their death. They also focus on medical care, allowing the patient to legally declare their wishes for end-of-life care in the event that they can no longer communicate or make informed decisions as their health declines. Once a patient has died, the living will has no power.
Mesothelioma patients must take a DNR into consideration as their disease progresses and curative treatment is no longer an option. A DNR is a legal document signed by the physician at the request of the patient or the patient’s legal representative, stating they do not want to be resuscitated in the event of respiratory or cardiac arrest. Doctors are bound by the DNR, as long as they know of its existence.
It’s important to note that in some cases, a DNR does not apply to out-of-hospital care, such as with an emergency at-home medical worker. Options and restrictions should be discussed with a mesothelioma lawyer to determine what’s best for the patient and their family.
Living Trusts for Mesothelioma Patients
A living trust is a legal document created by the patient, referred to as the grantor, that places all assets into a trust for the duration of their lifetime. After death, assets are transferred from the trust to the designated beneficiaries by a chosen representative, referred to as a successor trustee. Living trusts allow patients to exercise more control over their assets and how they will be distributed.
There are many other benefits to setting up a living trust. Probate associated with wills can be avoided, so assets can be distributed much quicker, often within weeks. This can also lower costs to the estate. Additionally, while wills are public, living trusts are kept private, providing patients and their loved ones with more privacy. Ultimately, will and living trust options should be discussed with an experienced mesothelioma law firm that is knowledgeable in what options are best given the particular case.
Funeral Planning for Mesothelioma Patients
It may seem uncomfortable for mesothelioma patients and their families to discuss funeral plans. However, many patients have an idea of what they would like done after their death, and this can help families make important decisions. For some it is a time of celebration, for others it’s a time of mourning, and it’s important to pinpoint what the patient prefers.
Involvement in Funeral Planning
Sometimes the patient wants to be involved in their funeral planning, while at other times, they may not want anything to do with it. They should be asked while they are still thinking and communicating clearly. If they don’t want to be involved, loved ones should take over the planning on their one with the help of friends and family.
Considerations When Planning a Funeral
Planning a funeral can be time-consuming and costly. Patient wishes and associated costs should be taken into account well in advance for proper planning. Points to consider include:
- Cremation vs. burial: Patients may want to be cremated, which requires a cremation company, or they may want a burial, in which case loved ones should arrange burial at a gravesite.
- Spiritual preferences: Some individuals may prefer to have a religious or spiritual service, while others prefer non-religious.
- Involvement: Individuals may want to specify others as pallbearers, a singer at the service, who delivers the eulogy and who they want at a potential post-service gathering.
Planning a funeral can be an extremely emotional process, so patients and their families should ensure that they are getting the support they need.
Author: Linda Molinari
Editor in Chief, Mesothelioma Cancer AllianceRead about Linda
Reviewer: Annette Charlevois
Patient Support CoordinatorRead about Annette