Parkinson’s disease is a progressive neurodegenerative disorder that affects movement and motor skills. As the disease advances, it can cause significant disabilities and impairments. At some point, people with Parkinson’s and their families may need to consider hospice care options. Hospice provides comfort care and support for those with terminal illnesses near the end of life. Determining when hospice is appropriate can be challenging for Parkinson’s patients. Here is some guidance on when hospice may become necessary.
What are the symptoms of late-stage Parkinson’s disease?
In the later stages of Parkinson’s disease, symptoms become much more severe and disabling. Common symptoms of late-stage Parkinson’s include:
- Inability to walk or stand without assistance
- Frequent falls
- Speech difficulties like mumbling or inability to speak
- Difficulty swallowing (dysphagia)
- Cognitive impairment or dementia
- Hallucinations or delusions
- Urinary incontinence
- Constipation
- Blood pressure fluctuations
- Increased rigidity or slowness of movement
- Frequent tremors
- Sleep disturbances
These advanced Parkinson’s symptoms greatly limit independence and quality of life. Daily care needs increase substantially. At this point,assisted living, nursing home care, or hospice may be required.
When is hospice appropriate for Parkinson’s patients?
Hospice care is for those with a terminal illness who are estimated to have 6 months or less to live. But predicting life expectancy with Parkinson’s can be difficult. Here are some general guidelines from neurologists on when hospice may be appropriate for Parkinson’s disease:
- The patient has advanced Parkinson’s symptoms like immobility, severe dysphagia, or dementia despite optimal treatments.
- Medications no longer adequately control symptoms or cause too many side effects.
- Frequent falls, injuries, or other issues cause repeated hospitalizations.
- The patient can no longer eat, communicate, or care for themselves.
- Pneumonia, choking, or breathing problems indicate end-stage disease.
- Comorbidities like heart disease, cancer,diabetes complicate Parkinson’s care.
The combination of advanced Parkinson’s plus other serious conditions can justify hospice. Overall it’s about diminished quality of life despite medical interventions. But keep in mind Parkinson’s progresses uniquely in each patient, making timing very individual.
What are some indicators that hospice should be considered?
Here are some specific signs and scenarios that may indicate hospice is appropriate for a Parkinson’s patient:
- Unable to walk, dress, bathe, or toilet without total assistance
- Falls multiple times weekly despite interventions
- Choking incidents occur regularly with meals
- Can no longer communicate needs verbally
- Unable to comprehend conversations or environment
- Requires wheelchair or bedridden due to stiff, rigid muscles
- Dysphagia requiring feeding tube for nutrition/hydration
- Pneumonia requiring hospitalization multiple times
- Disruptive hallucinations, delusions, agitation despite medication adjustments
- Unintentional weight loss of 10% or more in last 6 months
While every case is different, if a Parkinson’s patient exhibits several of these symptoms, it may signify the final stages. The care team should begin discussing options like hospice with family.
What happens when a Parkinson’s patient starts hospice care?
Here’s an overview of what can be expected when a Parkinson’s patient transitions to hospice services:
- The hospice team performs an initial assessment to identify care needs.
- Services are determined based on the patient’s condition including:
- Nursing care
- Social work counselling
- Spiritual support
- Home health aides
- Volunteer assistance
- Medication management
- Medical equipment provisions
- Symptoms are closely monitored and addressed, especially pain control.
- Family/caregiver education and training is provided.
- Goals emphasize comfort, dignity, and quality of life.
- Bereavement services help family cope with grief and loss.
The hospice interdisciplinary team works closely with the Parkinson’s patient, family, and the patient’s doctors to provide comprehensive palliative care. Services are tailored to make the remaining time peaceful and meaningful.
What is involved in Parkinson’s end-of-life care?
End-of-life care for Parkinson’s disease focuses on maximizing comfort and dignity as the condition declines. Some key aspects include:
- Pain management – Providing optimal pain relief through medications, positioning, heat/cold therapy.
- Medication adjustments – Tapering or withdrawing Parkinson’s medications that become ineffective or intolerable.
- Sensory stimulation – Using music, touch, reading out loud to engage the senses.
- Mobility assistance – Helping with gentle range-of-motion exercises and positioning for comfort and injury prevention.
- Nutritional support – Adjusting diet textures, feeding assistance as needed; providing nutrition alternatives if swallowing is impaired.
- Skin/personal care – Gently bathing, moisturizing skin; maintaining hygiene and grooming.
- Expressive support – Encouraging conversations, helping communicate wishes.
- Emotional/spiritual care – Counseling to process grief; respecting spiritual beliefs and rituals.
The goal is to minimize distress while attending to physical, emotional, and spiritual needs – providing compassionate support through the final stage of Parkinson’s.
What are some considerations for family members when hospice starts?
Some tips for family members when Parkinson’s hospice care begins:
- Ask questions – Make sure you understand the types and schedule of services provided.
- Discuss wishes – Talk to the patient openly about their priorities and concerns as desired.
- Enlist help – Accept help from hospice staff and volunteers; don’t try to do everything solo.
- Take breaks – Get rest during respite periods when hospice aides can sit with your loved one.
- Be present – Focus on quality time over quantity; simple connection can be meaningful.
- Provide comfort – Use favorite blankets, music, pictures, anything soothing and familiar.
- Journal thoughts – Write down memories, feelings to process the experience.
- Address rituals – Make arrangements aligned with spiritual or cultural traditions.
- Accept support – Seek counseling or join a support group to cope with grief.
This is an emotional time. Allowing hospice staff to guide and support you while also tending to your own needs is important.
How can I support my loved one emotionally through hospice?
You can provide critical emotional support to your loved one with Parkinson’s entering hospice care:
- Offer reassurance – Reassure them you will be by their side.
- Share memories – Reminisce over meaningful events and milestones.
- Express affection – Hold their hand, provide gentle hugs, convey your love.
- Listen attentively – Give your full focus when communicating.
- Read aloud – Read favorite books, poems, prayers out loud.
- Play music – Play special songs or relaxing instrumental music.
- Limit visitors – Don’t overwhelm them; keep interactions comforting.
- Encourage questions – Ask if they have any concerns; provide honest answers.
- Give permission – Reassure them it’s okay to go when ready.
Your support, empathy and reassurance can ease anxiety and grief during this transition. Simple gestures that convey your unconditional love are meaningful.
What preparations are made when death is near?
As Parkinson’s progresses to the dying process, certain steps help prepare:
- Maximize comfort – Adjust pain medications, pillows, temperature, lighting.
- Offer nourishment – Small sips of water if desired; mouth care for dryness.
- Limit interventions – Avoid invasive treatments; focus on comfort.
- Be present – Sit by bedside, hold hands, meditate together.
- Provide privacy – Allow quality time with select loved ones.
- Acknowledge dying – Give permission to let go when ready.
- Play preferred music/readings – Calm and uplift the spirit.
- Guide through rituals – Perform valued traditions and customs.
- Notify key contacts – Inform family, friends, clergy who may want to be present.
The hospice team helps guide the family through final arrangements respectfully catered to the patient’s wishes.
What are signs death is nearing for Parkinson’s patients?
Common indicators death is close for Parkinson’s patients:
- Minimal to no response to stimuli or voices
- Rarely awakening; excessive sleepiness
- Difficulty swallowing even small sips
- Changes in breathing -slow and irregular or rapid shallow patterns
- Mottled skin – purplish marbling on knees, feet, hands
- Decreased urination
- Body temperature fluctuations
- Pain or breathlessness despite medication
- Agitation, restlessness, visions of unseen things/people
As the person lets go of life, focus shifts to physical and emotional comfort until breathing ceases. Hospice staff educates families on what to expect and how to offer support through the final hours.
What happens immediately after a Parkinson’s patient dies?
In the first hours after a Parkinson’s patient passes:
- There is no rush – take time for mourning and goodbyes.
- Close the eyes, mouth; straighten the body if desired.
- Notify the hospice nurse who will come pronounce death.
- Notify the funeral home to come transport the deceased when ready.
- Begin notifying family and friends.
- Caregivers may wish to take a break from the bedside.
- Leave any tubes/catheters etc. in place; funeral home will remove.
- There is no need to clean the body. Funeral home will handle this.
- Discuss any cultural or spiritual customs with hospice staff.
Hospice will guide you through next steps. Move at your own pace. There is no set timeframe for saying goodbye or making arrangements.
Conclusion
Deciding when to begin hospice care for Parkinson’s disease poses challenges. But focusing on quality of life and tapping into hospice services can provide comfort, support and dignity through the final stage. With attentive care guided by the wishes of the patient, the end-of-life journey with Parkinson’s can be made peaceful and meaningful despite its difficulties.